Sunday ended National Invisible Chronic Illness Awareness Week. I first posted Monday on National Invisible Chronic Illness Awareness Week and included a link to this website . I have read all the blogs posted (70) as of this writing. What I have learned is that I am far from being the only person dealing with this outside my group of friends I have met since my journey began.
I have also learned that there are many “brave” men and women out there trying to carry on with their lives the best they can despite reactions, pain, chronic infections, chronic migraines, and the battle with depression either on its own or as a side effect of their other illnesses. The stories were not much different from mine. Some illnesses I was familiar with or had heard of but didn’t know much about. Other illnesses I had never heard of before which sent me on a quick Google search.
In honor of all those whose stories I have read over this past week, I wanted to share what I learned, and in honor of those whose stories are yet to be told, I say “GOD BLESS YOU” for hanging in there and for not giving up.
I am going to attempt to list all those illness that I read about here today.
Budd Chiari Syndrome (I didn’t know about this ) - a blockage of the hepatic vein which carries blood away from the liver resulting in liver damage.
Chronic Fatigue Syndrome see ME
Chronic Pain (I think this speaks for itself) – chronic pain can be caused from anything from rheumatoid arthritis to injuries from an accident.
Cuada Equina Syndrome (CES) - (One of so many illness that I was unaware of) - this is a rare disorder that affects the bundle of nerves roots (cuada equina) at the lower (lumbar) end of the spinal cord.
Cystinosis (another illness I was unaware of) - a rare genetic disorder that causes an accumulation of cystine, an amino acid, within cells. This causes crystals to form and build up damaging cells. The crystals can affect many systems in the body especially the kidneys and eyes.
Depression – this can be hard enough to deal with but could also be a direct result of any of these conditions.
Diabetes (something most people know about but it makes sense that it would be an invisible illness)
Dysautonomia or also referred to as POTS (I have heard this a lot among fellow EI and MCS sufferers) -This is a broad term that describes any disease or malfunction of the autonomic nervous system (ANS). The autonomic nervous system controls heart rate, blood pressure, digestive tract, and sweating among others. Some with dysautonomia are affected mildly while others can be left bed-ridden.
Ehler’s Danlos Syndrome (I had never heard of this before) – A group of disorders marked by loose joints and hyperelastic skin that bruises easily.
Endometriosis (I learned I had Stage IV while a hysterectomy was performed due to extreme hemorrhagic ovarian cysts and the possibility of ovarian cancer) - cells in the lining of the uterus grow outside the womb and attach themselves to other organs causing pain, sometimes debilitating pain.
Environmental Illness/Chemical Sensitivity (This describes me) - a controversial condition where slight exposures to a chemical or group of chemicals can cause a wide array of symptoms from severe headache and brain fog to neurological reactions and respiratory symptoms.
Fibromyalgia (I have this but not nearly as severe as others I know) - a common syndrome in which a person has long-term body pain and tenderness in the joints, muscles, tendons and other soft tissues. It has also been linked to fatigue, sleep problems, headaches, depression and anxiety.
Food Allergies (I have this as well) - An allergy to many foods. Reactions can vary from rashes and hives to anaphylaxis.
Glycogen Storage Disease or GSD (something I was not aware of) - An absence or deficiency of on of the enzymes responsible for making or breaking down glycogen in the body. Depending on the type of GSD a person has, their enzyme deficiency may be important in all parts of the body, or only in some parts of the body, like the liver or muscle.
Graves Disease – a thyroid disorder that leads to the overactivity of the thyroid gland.
Lupus Systemic lupus erythematosus (SLE) - an autoimmune disease which means the body’s immune system mistakenly attacks healthy tissue which leads to chronic long-term inflammation.
Lyme Disease (this is something that is finally making more headlines) – caused most predominantly by the deer tick. Left untreated, later symptoms may involve the joints, heart, and central nervous system.
Migraine - a chronic disorder characterized by recurrent moderate to severe headaches. Symptoms include nausea, vomiting, photophobia and phonophobia.
Myalgic Encephalomyelitis (I have heard this in terms of Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome) - is used to designate a significantly debilitating medical order or group of disorders defined by persistent fatigue.
Mycotoxicosis (another diagnosis of mine) - refers to the poisoning from exposure to mycotoxins. The symptoms depend on the type of mycotoxin, the concentration, and the length of exposure. Age, sex, and health also are determining factors in symptoms. Mycotoxins can potentially cause acute and chronic health effects from ingestion, skin contact, and inhalation. Some of the health effects found in animals and humans include death, identifiable diseases or health problems, weakened immune systems, allergens, or irritants.
NASH or Nonalcholic steatohepatitis (I had never heard of this disease before) - is a common often “silent” liver disease. It resembles alcoholic liver disease but occurs in those who drink little or no alcohol. The main feature is fat in the liver along with inflammation and damage.
Parasitic Infections – Many different parasites (including that which causes Lyme) can cause devastating effects on the body. Some I have read about during National Invisible Chronic Illness Awareness Week are Babesiosis, Bartonella and Ehrlichiosis.
POTS Postural orthostatic tachycardia syndrome is a condition of dysautonomia (see above). A change from lying to standing upright causes an abnormally large increase in heart rate.
PVC or premature ventricular contraction (another invisible illness I had never heard of) - may be perceived as a skipped beat or felt as palpitations in the chest. They are extra abnormal heart beats that begin in the heart’s lower chambers or ventricles causing insufficient circulation.
Rheumatoid Arthritis - a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs.
Sarcoidosis (A friend once told me she had been diagnosed with this) - Sarcoidosis is a disease in which inflammation occurs in the lymph nodes, lungs, liver, eyes, skin, or other tissues. The cause of the disease is unknown. Sarcoidosis can affect almost any organ of the body, but it most commonly affects the lungs.
Sjogren’s (again this was something I had heard about bud didn’t know anything about) - a chronic autoimmune disease in which white blood cells attack their moisture-producing glands. Most known symptoms are dry eyes and mouth but may also affect other organs such kidneys, blood vessels, lungs, liver, pancreas and the central nervous system. Another piece of information that I wasn’t aware of is that is one of the most prevalent autoimmune disorders and 9 out of 10 patients are women.
Wegner’s Granulomatosis - a rare disorder in which blood vessels become inflamed, making it hard for blood to flow. It mainly affects blood vessels in the nose, sinuses, ears, lungs and kidneys. It is thought to be an autoimmune disorder.
I had never heard of National Invisible Chronic Illness Awareness Week until a week ago. What I learned is that I am so glad that there is a venue where we can gather to tell our stories. I was amazed at how many of us are blogging about our illnesses and the number of illnesses that I had not heard of before or had even thought of as being an invisible illness. I have chosen to follow some of these blogs to keep up with the progress of others.
Kathryn Treat is the mother of two. She was a stay-at-home mother who decided to return to the work force in 1999 when her younger daughter was about to graduate from high school. Shortly after returning to work she began getting sicker and sicker and discovered that she was being exposed to mold in her workplace. After battling the workers’ compensation industry for years, she decided that she needed to write her story to let others know that mold indeed can make one sick. She is in the process of preparing her manuscript for publishing this fall. She also started a blog http://allergictolifemybattle.wordpress.com where she includes excerpts from her book and discuss things she has discovered, including what it is like to live with environmental illness (also known as multiple chemical sensitivity) and food allergies.
Popularity: 6% [?]
Is anyone out there?
One challenge that I particularly face, especially when one considers it is a rare condition–is simply by trying to find an audience for my blog. Again, as I have previously mentioned it is not a common condition with very little information on the Internet or in medical books and have not yet met anyone exhibiting the same condition as myself. As a result, I often wonder if anyone reading my posts can relate to them or if they are relevant to other conditions.
Many of the symptoms are general, such as the dizziness and vertigo can be applicable to many different conditions, and the spastic paraparesis is itself a symptom and can be found in patients with multiple sclerosis and Parkinson’s Disease. But still the question remains whether my blog is helping and making a difference to others. Do I have something of value to add and share with whole health community?
I am too tired to write
The second challenge is being able to keep up with the writing and health activism whilst feeling so very unwell. A lot of the time, I really feel so unwell that the last activity that I feel able to take part in is by going on the internet, and writing or taking part in some other activist related activity. Us health activists need to attempt to learn to balance our lives. Health activism is so important, it often gives us something to focus on besides our illness, and advocating for ourselves and others is an excellent approach to doing just that at, however, it is also important that we take time for ourselves and give ourselves a chance to recuperate when symptoms are bad and to rest as much as possible.
The challenge of educating those who are well
And the third challenge that I personally face, as a health activist is to effectively make people aware and to understand the challenges that patients with an invisible chronic condition face everyday, to let them know that although we make look well, that it is not always the reality.
And in addition to make others aware of the language that people often use around those with invisible chronic conditions – that they are not often useful or helpful and can be really hurtful. Some examples of things not to say to a person with an invisible chronic condition are:
“It’s probably just stress” – this undermines the severity of the symptoms being experienced; as if the person is exaggerating their symptoms as well as undermining the diagnosis given by a qualified medical practitioner
“It’s all in your head” – this can be really undermining and hurtful for someone with an invisible chronic condition; just because you are unable to see the problem does not mean that it doesn’t exist
“You’ve made it! You must be feeling better” – this fallacy is one that I get a lot and can be really infuriating. For my condition and many others there is no quick fix or even a cure and hearing tis proves that invisible chronic conditions are completely misunderstood and no effort is even being made to understand by others. For myself, I often try to make an effort to visit someone for their benefit as well as my own, often the worst thing to do is stay in and feel unwell and often like to leave the house to get fresh air and to have social contact with others
“Everyone experiences that” – I often get this directed towards the dizziness that I constantly suffers and feel that it often minimises the effects of the dizziness, yes, a lot of people experiences dizziness, but it many not be of the same severity that mine is, and often is not felt constantly as mine is.
And there are many more! Can you think of others that people say to you which are not helpful? Please share them with us and perhaps I can do a follow-up piece on the topic!
Rhiann Johns was diagnosed two years ago with what is called a long-standing brain stem lesion and spastic paraparesis. This basically means that she has scarring on the brain stem which, for her, causes chronic dizziness with frequent episodes of vertigo with visual disturbances. The spastic paraparesis causes stiffness and weakness in the legs, making it uncomfortable when walking and means that she is unable to stand for very long. Although, she was only diagnosed 2 years, she has had this since she was born, although the doctors are unsure of how it happened. Although, she has always had problems throughout her childhood and teenage years, she was able to still gain a BSc Psychology. Recently, her condition has deteriorated a lot.
She blogs about it frequently at My Brain Lesion and Me
Popularity: 5% [?]
Allowing your invisible illness to show is akin to “standing naked in a crowded room of well-dressed people.” I saw this statement on the blog site, Sick Momma and all I could picture was the story of the Emperor’s New Clothes.
In case you have forgotten it:
Once upon a time there was this Emperor that was so full of himself that he was easily trick by gangsters posing tailors. They said they’d make him some duds that only non fools could see. So when they bought the Emperor the suit and he couldn’t see it, he thought OMG, am I a fool or what. And not wanting to appear a fool, he pretended to put the invisible suit on, when in truth there was nothing there. So the old fool, the emperor, went out in public in his invisible clothes. No one wanted to tell the Emperor that he was naked except for a punk kid. But the Emperor continued to pretend he was still dressed because he didn’t want to appear the fool that he was.
The Emperor was “naked” in crowd of dressed people. That is how the people with an invisible chronic illness feel–naked. Those with invisible chronic illnesses feel vulnerable, living in a world of healthy and whole people.
Those with invisible chronic illnesses walk around with their mask on. They only let there mask slip a bit to let there nearest and dearest friends and family know about their illness. But they shouldn’t have to live this way. Having medical issues doesn’t mean the person was cursed by God, a sign of moral failings, a sign of weakness, or they in some way deserved to become ill. It just simply means they are ill.
Invisible chronic illnesses are easy to hide. You can hide them from others and you can deny them to yourself at times (especially if others don’t know you are ill).
I consider myself one of the lucky people with an invisible illnesses. . .
One of my illnesses is Post Traumatic Stress Disorder. During and educational seminar that I was helping to run, I had a flashback. Suddenly, about 50 people that I worked with became very aware that I had PTSD. My invisible illness was “outed” so to speak; my invisible illness was visible.
Being “outed” is probably the best thing that ever happened to me. Hiding an illnesses if a horrible way to live. It is living the life of a lie, it is not living in the reality of the truth. I think everyone with invisible chronic illnesses deserves the best in life they can get, and the best includes the truth. Now, I get to celebrate openly, the fact that I survived what was once an unspeakable time in my life. I get to celebrate that I am alive, living with chronic illness, but alive.
Now I am very upfront about my invisible chronic illnesses when appropriate. If people honestly want to learn about the illnesses I have, I am more than happy to teach them (I am a disable RN). I know that the best way to get rid of stigmas is to speak out about them; it is important to educate those around us. As for me, I like to share the hope and freedom I have gained by speaking out.
Suzy Raffensperger is married and has 3 adult children. She is the author of Mimi’s Tale: A Story of Transformation. She had a migraine variant that left her residual neurological deficits. The deficits affect her short term and working memory, and left her unable to continue working as an RN. Besides Chronic Migraines, Although Suzy has many chronic invisible illnesses, she finds her Mixed Connective Tissue Disease, Fibromyaglia, Asthma. Post Traumatic Stress Disorder, and Diabetes the ones that most interfere with her daily life.
Being unable to continue to function in a typical setting for a nurse, Suzy has taken to blogging as a way of chronicling her journey towards better health and passing on articles that she thinks may help others on similar situations. Her blog can be found at artfulabilities.blogspot.com
Popularity: 7% [?]
Often loved ones have difficulty with going fragrance-free for someone who lives with mild to serious reactions to chemicals in fragranced products. As you can imagine, this can lead to isolation and feelings of being abandoned for people like myself who miss out on holidays, get-togethers and simple visits.
This is a video I did with my friend, Karyn Buxman when I had to have surgery out of town and needed a place to stay. I wanted to get a candid view of what a friend or family may feel, fear or think when I ask them to go fragrance-free so that we may visit.
I hope that loved ones will see how simple this is and how valuable it is to make a difference in the life of their friend or family member. The Cleaner Indoor Air Campaign is using this video to create more awareness for the millions living with Environmental Illness (Multiple Chemical Sensitivity, Chemical Injury, Toxic Encephalopathy).
Research done in 2004, 2005 and 2009 by Stanley M.Caress and Anne C. Steinemann “… found that nearly 38% of Americans report adverse effects when exposed to some kind of fragranced product.” With approximately 310 million people in America in 2010, that is almost 117 million Americans who report adverse effects to normal, everyday products.
For more information on the Choose Friendships Over Fragrances project, visit the Cleaner Indoor Air Campaign (CIAC)
Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. She lives with unbearable and disabling pain, fatigue, cognitive disorders 24×7. She also has Chemical Injuries and Intolerance, which has kept her very isolated from friends and family.
Sherri’s website comes to life with her writings and videos sharing her story, information about her illnesses and a positive outlook amidst her daily pain and losses, as well as her desire to help friends and family better understand debilitating conditions. Sherri’s husband, Wayne, is the Founder and President of the Invisible Disabilities Association.
Popularity: 4% [?]
Ask anyone and they would tell you that there have been some bumps in the road that they have had to overcome. No one person’s life is ever easy. There will always be obstacles and challenges. But, in general, life probably is pretty okay for them.
Now, for those of us who have chronic illnesses, the difficulty increases exponentially. And, if those illnesses are invisible to the outside world, then it becomes an impossible burden to lay down.
All anyone in the world wants is to be accepted, embraced, validated and loved. Everyone yearns to be understood. Could you imagine how it feels to be sick nearly every day but hardly ever look it? To be crippled by pain but it goes unnoticed? To endure the mental pain brought on by the physical? This is the life of a person with an invisible illness. And more times than not, it’s more than one.
What is my life like?
Well, I’ve become pretty good at being efficient even though I’m in a lot of pain. That comes from learning to live with pain from a young age. Being a kid with migraine disease isn’t easy. I had to deal with speculation from teachers and classmates. My pain wasn’t frequently validated and I felt like not many cared or believed me. So, I learned to stop seeking for that understanding or caring.
I dealt with my pain on my own, and since life was going to continue regardless of how bad I was hurting, I had to pick myself up and push through the pain. I have become quite good at it. I learned that not many people cared that my head hurt a lot. The work was still expected of me and I had to deliver.
I had projected this expectation onto myself in the areas of motherhood and wife. Being a mother is my greatest accomplishment and I take my role very seriously. There’s no excuse to not be a good mother; not even blinding, c rippling, disabling pain. So I have gone on field trips, to Girl Scout meetings, sat through plays and concerts, picked kids up and dropped kids off, and more while in pain. My duties as a mother don’t go away just because I have a migraine. There are appointments, projects, homework, birthday parties, school functions, and after school activities. September through June is the toughest part of the year.
When the pain is invisible
Migraine disease is a horrible disease to have by itself, but it rarely travels alone. I also have Major Depression Disorder (MDD), General Anxiety Disorder (GAD), Chronic Daily Headache (CDH), Chronic Migraine (CM), and Fibromyalgia. None of these diseases and disorders are visible to the naked eye.
They are neatly packaged and concealed underneath my skin. They actively try to destroy my body and my mind under the cover of darkness. I wish everyone could see how horrible it gets. I don’t use a wheelchair, walker or a cane but my fibromyalgia makes it almost impossible to walk at times. I can’t tolerate fluorescent lighting but I don’t have special accommodations for my photophobia when I go shopping. I can’t eat certain foods but no one classifies any of them as dangerous to migraineurs. I can’t go outside during extreme heat and humidity but no one cautions migraineurs to stay in an air conditioned room on the news. There are no ad campa igns, walks, or awareness events for migraine disease.
And then there is mental illness. . .
Dealing with mental illness is another challenge. It is still considered taboo to talk about it and the stigma still exists about mental illness meaning a person is psychotic. No one wants anyone making them feel crazy because they are depressed, bi-polar or have an anxiety disorder. Once someone knows you suffer from a mental illness you are treated differently, so we keep that illness close to the chest.
We only divulge our struggles with them to other people who have a mental illness(es), our therapists and psychiatrists, and maybe some family members or friends. No one goes blurting out, “Hey! I had suicidal thoughts last night!” or “I’m so depressed that I didn’t get out bed for a week.”. Having society be so ignorant of mental illness makes dealing with it that much harder.
And then fibromyalgia
Now, thanks to my nervous system being extremely sensitive and always on, I developed fibromyalgia. The simplest way to describe my fibromyalgia is that it feels like I have rheumatoid arthritis in all of my joints except it doesn’t disfigure me and the pain is really coming from my overactive nerves. It gets really bad whenever rain is in the forecast. My wrists, fingers, ankles and feet hurt regularly because I have to use them everyday.
Walking and driving and typing and writing are painful tasks for me now. I need to pace myself or I wind up getting very bad dizzy spells. I can’t clean my bathroom or wash dishes without being in pain. Even cooking has become an issue. All of these limitations are depressing. And based on my external appearance no one could ever guess that this is the life that I live.
Every day is a challenge, but it is also. . .
It is also an opportunity to educate. I use my illnesses as a platform to dispel false statements and stigmas and to make more people aware of what a chronic invisible illness is. People like me have to fight to be heard and recognized by many different arenas of people–family, friends, coworkers, doctors and nurses.
Advocating for oneself is very difficult to do, especially when you are constantly being beaten down by your illness(es). It’s important for me to people to see us. I make my illnesses visible through my words making it tangible to those who don’t understand it. All we want is compassion, recognition and understanding. Hopefully this isn’t a goal too hard to achieve.
Jaime Sanders is 34 years old and lives with her husband of nearly 15 years and three children. She was first diagnosed with having Migraine disease at the age of eight. As an adult, Jaime’s migraines became chronic. In 2009, she was also diagnosed with having chronic migraine and chronic daily headache. Jaime also suffers from depression and anxiety and was diagnosed with fibromyalgia last year. It is important for her to spread awareness about Migraine and chronic migraine, which she does using her blog, Migraine: Living in Pain (http://migraine-livinginpain.blogspot.com ).
Popularity: 5% [?]
I hope that you always look for the silver lining
Even when all the clouds do is rain.
Remember that stars are always shining
Even when the sky is as dark as pain.
I hope your spirit stays full of light
On dreary draining days.
I hope you always keep up the fight
To persevere in many ways.
Treatments can fail and symptoms return
And sometimes doctors don’t know what to do,
Remission can be hard to earn
That is what I hope for you
When you are feeling lost and all alone
And life is shaking hands with pain
I will be there to help your heart turn from stone
And show that all this can be of gain.
I hope you know that your trials have strengthened you
You have gained persistence and grace.
Your journey has left footsteps on a path
People can follow your inspiring pace
I hope you remember that tears can be blessings
They are a sign that you are still holding on
I hope you continue even when illness keeps pressing
The darkest hour is just before the dawn.
I hope that love and joy will help you cope
And that God will pull you through.
May you always fill up your cup of hope,
That is what I hope most for you.
Chelsey Lawrence lives in Seattle, Washington with her supportive husband. She is a human services graduate who was diagnosed with a rare invisible and incurable illness called central nervous system vasculitis when she was 17 years old. This is where the immune system attacks the blood vessels in the brain and causes a variety of neurological symptoms.
She has learned to praise God’s name through times of remission and times of severe flare-ups. She desires to share hope and encouragement with others who live with a chronic illness through her blogs Helping Other Patients Everywhere and Hope For The Spirit. She also appreciates music therapy and knows how it can help comfort and lift the spirit. You can find the HOPE Youtube channel here
Popularity: 5% [?]
When you get diagnosed with a chronic illness you start to think how is it going to affect your life. I never once thought how it was going to affect anyone else. Pretty selfish really.
When you think about it properly, it affects a lot of people around you. Your spouse, your children, your family, friends, and work colleagues.
Here’s a few examples of how my illness has affected the people closest to me:
When I am having a “bad day” he has to do a lot more than most parents would. He clothes, feeds, changes and carries our baby. He has to drive me around if I’m not up to it. He’ll cook tea and wash up if I don’t have the energy or I’m too dizzy to stand long enough to cook a meal.
He gets annoyed and angry that he’s having to do all the extra work while I lie around but he’s annoyed and angry at me.
He’s like that because there is nothing that can be done to make me better and back to the way I used to be. Sometimes I don’t wake up through the night when our baby cries because of the medication so he has to get up more than I do. I know he’s exhausted. But I do appreciate it even though I may seem sometimes ungrateful, I’m not. It’s just that I’m constantly tired and I always seem to be in a bad mood. I know I need to show my appreciation a bit more often.
There have been days when he hasn’t even been changed out of his pyjarmas and we’ve lay in bed all day. Just for the fact I’d had no energy to carry him or been to dizzy to stand up. On my good days I try to get out of the house as much as I can, even if its for a small walk so he gets a bit fresh air.
I feel guilty that I can’t carry him for longer than a minute without my back and hips giving in. I can’t go out everyday with him and play on the floor and throwing him about (he loves being held up ion the air) –like his dad does.
I suppose he doesn’t know any different yet but when he grows up he’ll realise there a lot of things that other peoples mothers can do that I can’t. I just hope he understands.
I’m forever asking for lifts and favours. ”Could you call in the shop after work and drop some milk in for me”– as I can’t face walking 100 yards to the shop which would mean getting myself and the baby ready. It would take up a few spoons doing so.
I’ve recently had to ask for my mother to come to my home on her lunch break and take Bobby to the childminders as I was too ill to look after myself, never mind a baby. When my husband starts working offshore later in the year I am probably going to have to ask for even more help. Since I’ve still never managed to bath him myself, I think he’ll be going along Grandmas for a wash.
My work colleagues:
If you’ve read my previous posts you will know that I’ve been seen by Occupational Health at work and that changes to my role have been made in order for me to stay in employment. I’ve recently been told that they cannot stay in place permanently and that I could basically loose my job because of my condition making me incapable of ‘some’ duties.
Because of these changes being made for me (which has been my shifts have all been changed to days only) it has meant that one of my colleagues has been changed to all nights which is completely unfair. She to is a mother, of 3, and is spending 5 nights a week out of the house and not leaving work until after 11pm. Of course this is going to cause arguments and I know that I didn’t ask to be ill but it doesn’t stop me from feeling guilty.
If I just left my position everything would go back to normal and she would have her family/work life balance back. Some of my duties have been offloaded onto other people, i.e deliveries. I must admit I haven’t kept to this change in duties. I’ve still put cages full of stock away with asking for help. I hate asking for help. I’d rather just get on and do the job but I injure myself doing so. I know what my body is and isn’t capable of, I just tend to ignore it. I need to learn to stop being so proud.
I’d like to round up by saying, I know people with illness all suffer in some way or another but give a thought to those around you to. Living with chronic illness can affect you not just physically, but emotionally, socially, and for me if I loose my job, I will be affected financially. Obviously it is the patient that will have the physical affects but the emotional, social, and financial can be felt by those close to you.
Give them a thought once in while.
Stacey is a 25-year-old recently-married new mum. She has suffered with joint and muscle problems her whole life and only this year has been diagnosed with Joint Hypermobility Syndrome. Finally, everything that she has suffered with now makes sense and she can actually “label” her condition instead of saying to people “Oh, I’ve just got a problem with my muscles.” She blogs about her struggles as a new mum and trying to keep her full-time job whilst coping with her condition. You can follow her blog at http://savouryourspoons.blogspot.co.uk/
Popularity: 6% [?]
“Maybe you could find some shoes that look a little more professional,” said my boss, just days after my diagnosis with rheumatoid arthritis. I was 24 when I discovered that life as I had known it was over. That was 19 years ago.
Unable to put weight in nearly any part of my feet and getting continuous cortisone shots, I had succumbed to wearing office work attire with nylons and cute socks. . . And Keds tennis shoes. I thought it was a temporary part of RA, but I have worn less than 5 pairs of shoes since then–including a pair of sandals for six years that I repaired with duct tape.
I am not a slob, but it feels that way. Like Maria in West Side Story I long to sing out, “I feel pretty, oh so pretty.” Instead I just feel heavy, clumsy, off-centered.
I once worked in high-end retail boutiques. I had closets of shoes, scarves, fun clothes, and business attire. I had hats, jewelry, and loved to shop. I was in charge of window displays at the mall and I helped women put together outfits with accessories in colors that flattered them.
But since then so much as changed. . .
I share these challenges I have in case they sound familiar to you:
- I have gained weight, lost it and gained it back, thanks to prednisone. My round face is very round now and I always feel puffy.
- I have not found a bra that fits well for over ten years, that I can get on and off and offers support.
- I have Mary Jane orthopedic shoes. Though they are sort of cute for diabetic shoes, they don’t look stylish and they really do not “go with everything.”
- I cannot do anything with my hair since my arms don’t reach up or back to curl, blow dry, etc. I let the curls air dry and fortunately it looks okay if I use a lot of anti-frizz items.
- Due to the degeneration of many joints, one shoulder is higher than the other, causing every shirt to fall off one arm and show my bra strap. Anything with a v-neck is off-centered in a matter of minutes. One sleeve always appears longer. I didn’t know about the sleeve length issues until my husband admitted it the other day.
- My hands are deformed, but my feet are scary. Little girls with their moms in dressing rooms are horrified to see my feet in the dressing room nearby.
- I wear a lot of black to cover up stains caused by my clumsiness. It seems I am always dropping something down the front of my shirt. My hands do not grasp things easily and forks go flying.
- I try to find clothes that are easy to get on and off; elastic waists for days of puffiness or pain, I buy long necklaces to trick people’s eyes into going up and down and not just seeing roundness when they look at me.
- No matter how hard I try, I can’t seem to find the right attire for different occasions. I feel overdressed or under-dressed. I find the perfect t-shirt to throw on only to discover it has a new stain from somewhere. I find a cute outfit for a conference but my black clunky shoes look like I have no style. I put on clothes for church I wore a week earlier and they are so tight from being bloated they feel like they were made for someone else. I end up in tears.
My illness is not noticeable by most people. And those who know I have rheumatoid arthritis don’t realize it effects how my clothes hang or shoes fit. They don’t realize my weight struggles are caused by medication and inability to do most exercise. They don’t know my deformities cause so many clothes to hang on me in weird ways and look silly. Instead, I just look like I don’t care.
I care. I shower (nearly) every day. I put on makeup every day unless I am seriously sick (in addition to being ill). I have put on pantyhose for special occasions even though I feel like one of those canned biscuit mixes about to pop. I put on perfume daily, coconut lime body spray, and every product you can find that says, “age defying.”
But I don’t feel pretty.
So, when I show up for the dinner you invited me to and my shoes obviously don’t match, please don’t give me “the look.” When I sit beside you at church to the Saturday night service, don’t let your eyes show me you are questioning why I chose this dressed up outfit. When I don’t wear a swimming suit to the pool but I do being the widest brim hat you have ever seen, please don’t fuss about wanting me to swim.
I am trying.. . .
I am trying. . .
Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.
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This week, I bought a new pet. Well, not really a pet, but that’s how I think of him. I decided to expand my group of carnivorous plants and I bought my first Venus Flytrap. I love carnivorous plants. They are so exotic and unusual, each one so marvelously different in how it manages to catch prey and survive.*
My new flytrap is quite young and small. My husband and I named him ‘Fang’ as I consider him to be male. Fang can catch flies and other similar insects in the open ‘traps’ which top each of his stems. There’s only one problem; it’s been so chilly that I’ve been having to keep Fang mostly indoors. All his prey is outside (and I intend that they stay out of my apartment!) so he has had nothing to eat since I bought him.
I’ve been trying to find bugs for him. I dug into some of my plant pots and my hubby even scratched around in the dirt near my pond. Nothing! How can it be that when you need some bugs you can’t find any? I may have to go to our local pet store and buy some crickets just so Fang can have a meal and get the nutrients he needs to start growing.
In the middle of this dilemma, I began to think of Fang as someone with chronic pain/illness. If he was living in the wild, he’d be in a marshy swamp exposed to the elements and unable to help himself. He couldn’t reach his food; he could only open his traps and hope to entice the prey to come. He could not ask for help or rely on a neighboring plant. He couldn’t pick up and move to a better environment. He would be at the mercy of his surroundings. He’d be truly stuck. Isolated.
When I was in the worst part of my depression, anorexia, and chronic pain I isolated myself from the world. I allowed myself to get stuck in the swamp of my dark and hopeless feelings and I did not leave the house (I hardly left my recliner–I’m surprised I didn’t have to have it surgically removed from my derriere!). I didn’t interact with people if I could help it. I mired myself in an unhealthy isolation. I allowed myself to become like Fang, holding open my hands wishing for help and a better life, but not pushing myself into a place where I could actually reach what I needed.
Of course, I eventually did get the help and my life is completely different now. Even so, I do on occasion catch myself getting into isolation mode, wishing for something better but not putting in any effort to achieve it, just sitting there and shunning the world, feeling like it requires too much energy.
We all feel that way sometimes. The trick is to recognize when you are starting to isolate yourself and not allow it to last too long. Most importantly, if you are having a depressive episode or a bad symptom flare-up, see your doctor. However, if you just find yourself wanting to close off and hide away from the world, think about Fang and don’t let yourself get isolated:
Ask for help. . . or just a little attention from your loved ones to feed your lonely soul
Be willing to accept help. You’ll have the chance to return it to that person someday.
Pull yourself out of your ‘swamp’ and force yourself out of the house: to a movie, to have coffee with a friend, for a walk with your neighbor. Make yourself spend a little time with another person every day. Don’t let yourself be alone all the time.
Find a purpose!
Get a head start on Christmas gifts and knit a scarf for your Mom, volunteer at the local shelter to pet the cats or walk the dogs, take up a cause like fighting Fail First policy in your state, ‘adopt’ a grandma or grandpa at your local nursing home and brighten their life with visits, get your friends together and start a book or recipe club, etc. Find something that feeds your soul and gives you the motivation to get up out of bed every day. Pushing yourself to work toward a positive goal gives a feeling a satisfaction that even eating chocolate cannot beat (Did I just say that? yeah, it’s true, believe it or not!)
Poor Fang. Even though I can protect him from the weather, I cannot make bugs fly into his reach. Thankfully, he does not need a voice to ask for help because I am here to provide for him until conditions improve.
Now, off to buy some crickets at the pet store.
Shannon has a painful genetic connective tissue disorder believed to be Ehlers-Danlos Syndrome Hypermobility Type. Her struggle with pain led her to start a blog called Nip Pain in the Bud & Let Your Soul Blossom. Using her love of gardening as a focus, she writes about being educated on your pain condition, becoming a smart patient, and finding creative ways to experience life to your fullest ability. On Tuesdays she posts articles about pain issues and conditions in the news.
She loves her husband, her cats, and her garden–especially her dahlias! She says, “Finding ways to nurture my plants feeds my soul and gives me hope. I want help others avoid the same traps I fell into and help them find the same joy.”
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To me, an invisible illness or disability is one that can’t be noticed easily. It can be psychological or physical, it can take many shapes and forms. I have multiple invisible illnesses, and other than them being problems themselves, I also deal with many repercussions because of them being invisible.
This story is about my general progression and hardships through life with an anchor of invisible illness dragging me down.
I didn’t start presenting symptoms of anything until I was 10 years old. At that time I started developing back pain and ADD (Attention Deficit Disorder.) By the time I was 12, I was severely depressed, suicidal, an insomniac, and suffering with chronic pain and chronic fatigue.
By the time I was 16, all of the previous symptoms mentioned had worsened, I had developed Reynaud’s Phenomenon, a circulatory issue, my immune system was weak and I got sick easily and the illnesses hit me harder, and I also had daily fevers that ran my temperature so high I was exhausted and could barely do anything past 12 PM.
People thought I was making it up
The biggest problem with my illness was that there were no visibly physical signs. Other than looking tired, nobody could really tell that there was anything wrong with me. When I was 10 I had begun to see a psychiatrist. By the time I was 15 I was on over 11 different psychological medications for various things and was quite ill.
I saw a slew of doctors over the years. There were no signs that there was something wrong with me in my blood tests, urine samples, physically–nothing–other than my word. Many doctors informed my mother that it was psychological, or that I was asking for attention. Eventually, my mother, against what her heart told her, began to believe that the doctors were correct. She didn’t know what else to do.
At this point in school, I had one friend. I could barely attend school, I was miserable all the time. I had actually begun to believe what the psychiatrists had told me: that I was essentially crazy, that I was making my illness up, that I was desperate for attention.
And then a teacher believed me. . .
Finally, the first person in my life who truly believed I was ill appeared. He was a teacher, and he changed my life and helped give me the courage to keep believing that I was not crazy, and I did, in fact, have an illness.
When I was 16, my brother was diagnosed with an autoimmune disease. I won’t go into details there because that is his personal and private information. It was then that we realized that autoimmune diseases ran in the family: my father had one and my grandmother had one, as well.
Autoimmune diseases are a funny thing. It is theorized that while they are genetic, it doesn’t work like most other genetic illnesses work. It means that you have a susceptibility to an autoimmune disease, but not the particular one that your predecessors had, although in certain circumstances that can be more likely (for example, Lupus.)
My mom helps me again
Finally, after what unfortunately happened to my brother, my mother finally picked right back up and started taking me to doctor after doctor again. Eventually, we found one who heard my story, and believed me. Furthermore, he found proof.
It was barely any proof at all, but enough to know that something just wasn’t right with me. Multiple things had come back with positive during rheumatological blood tests. Not enough to categorize my symptoms as a specific illness, however.
The first thing my mother and I did was immediately change all of my doctors. I got a new Psychiatrist, Psychologist, and PCP. I got off all of the psychological drugs except for one antidepressant. I got on drugs to prevent what they thought could possibly happen to me in the future: Lupus.
My final diagnosis?
As it turns out, I have a mishmash of different illnesses. It is similar to if you stuck your hand into a mixture of different autoimmune disease symptoms and grabbed some. A lot of symptoms I have are similar to Lupus, though. On top of my illness, which they have dubbed “undifferentiated connective tissue disease,” I have fibromyalgia, insomnia, and chronic fatigue, among others.
I will not say that my path since then has been easy. I barely scraped through high school, and I had to drop out of college twice before the first semester finished because I got sick. I took a long break and my symptoms began to worsen.
After an incident where I got very sick finally landed me in the hospital, at 19 years old, the doctor told me that I needed to do something about my life, and now was the time that I could change it or, essentially, choose to waste away. I took a stand and decided I would do something: I went to a rehab center for Pain Management for about 6 weeks.
I turned my life around
I am currently in college, and have finally finished my freshman year. At the age of 23, I have proudly just started my sophomore year and am no longer ashamed of myself and where I am in life. I am not taking any antidepressants and it was proven that my mood is actually dependent upon my physical well being.
It is not a cakewalk; every day is a chore. Each day presents itself seeming like the hardest thing I will ever have to do. Even worse, my illness seems to keep progressing, as my pain has steadily increased. Still, though, I will continue to fight as hard as I can to lead the life that I want to lead, because the alternative is wasting away in my own misery. The burden I carry, the anchor dragging me down, can be held up with enough inner strength and determination.
Sherry Reina Hochbaum is a 23-year-old photography student at Pratt Institute, as well as an artist, a gamer, a sci-fi nerd, and many more things. This is the first part in a series of her current blogging attempts at explaining her invisible illness and things that affect her because of it.
You can see more at reispeaks.tumblr.com/ or her photography portfolio can be seen at reinah.com.
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