Shedding Light on Invisible Chronic Illness
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September 14, 2011 by admin
Filed under Guest Bloggers & Articles, What's New, How to Help
This week is National Invisible Chronic Illness Awareness Week where all of us with chronic illnesses and those who do not shine a spotlight on the epidemic of having an invisible chronic illness and to be uplifting advocates for so many without a voice. It’s an unfortunate reality that so many people go unnoticed or are ignored and forced to suffer in silence just because they “appear” healthy. The stigma that so many are dealing with can undoubtedly be overwhelming. The theme for this year is “DEEP BREATH, FRESH START.” It is to remind us to take care of ourselves in healthy ways and how to add more joy and sunshine into our lives.
My personal connection with invisible chronic illness is my battle with chronic daily migraine, depression and anxiety. On the exterior I look great; healthy and doing well. Yet, inside I am suffering on so many levels experiencing different types of pain be it mental, emotional and/or physical. For 25 years I have lived with the stigma of migraine and having my illness reduced to just a simple headache when in fact migraines are very different from headaches.
Migraine is a genetic neurological disease, characterized by episodes often called Migraine attacks where the blood vessels that are located within the brain constrict or dilate. The main pathways to get important fluids to the brain are either getting larger or smaller causing extreme pain due to the inflammation that is occurring. Often, migraine is described as pulsating pain because that is exactly what it is. Blood vessels are rubbing against different parts of the brain causing indescribable pain.
Typical migraineurs experience two to four migraines a month. In my case, I have 15 or more a month for at least three months (a year now for myself), thus classifying me as having chronic migraine. The causes of chronic migraine are classified as such according to MayoClinic.com:
You develop a heightened response to pain signals
The part of your brain that suppresses pain signals isn’t working properly
Various factors can increase the risk of developing frequent headaches including:
Anxiety
Depression
Sleep disturbances
Obesity
Snoring
Overuse of caffeine
Overuse of pain medications
Regular use of positions that cause strain on the head or neck
Coping with this kind of pain is a very difficult task, especially when you throw in bouts of depression and anxiety both of which are comorbid with migraine. I have had many challenges in learning how to cope with it all. I even attempted suicide in 2004 because the burden of pain and emotional distress was too much for me to continue battling.
Thankfully, I survived but had to spend three days in the ICU because the drug that I chose to end my life with and the amount that I took (almost a full bottle) causes such severe and quick damage to the brain and heart that I had to be monitored closely to make sure that all of it was removed from my system.
It was an eye-opening experience where I learned that I had to live for my three children. They were the reason that I decided to call my husband and tell him what I had done. They were the reason that I’m here today. And it’s still because of them that I continue to push through day after day of pain. God spoke to me that night and said to me, “You have three babies downstairs.”
That voice was so loud and clear and distinctly not mine. I knew it was Him telling me to live for them.
So I did.
So I’m here to encourage all of you to live. There can be joyous moments in between the pain. Chronic invisible illness does not have to be the end all be all of your existence. I understand how frustrating it is to feel ignored and mistreated and spoken to as if you are imagining your very real pain.
The many doctor appointments, prescriptions and failed treatments can all bring a a failed sense of hope.
Remember that you are never alone. And people like myself are here to help. There are so many resources available for healthy ways to learn how to cope with your illness and where to find help when you need it. Let’s all work together to make invisible chronic illness something that is impossible to ignore.
Online Resources:
- Invisible Illness Week
- Migraine.com
- National Patient Advocate Foundation
- Psychiatric comorbidity and suicide risk in patients with chronic migraine
- American Association of Suicidology
About the Author:
Jaime Sanders is a 25-year sufferer of migraine disorder and over the past year has had chronic daily migraine. Jaime has undergone many different treatments including Botox injections, acupuncture, cranial sacral massage, chiropractic care, pain management, and has taken over thirty different kinds of medications in order to try and control her very debilitating disorder.
She is a wife of 14 years to a wonderful and supportive husband and a mother to three exceptional children. Jaime can not work due to her disability but she has made a commitment to educate others about her neurological disorder so that others would not have to suffer as long as she has. You can follow her journey through her blog at migraine-livinginpain.blogspot.com.
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Just trying to advocate invisible diseases as everyone else who have them. I get so depressed when people just don’t get why I don’t or can’t do things they are so unaware of the pain and exhaustion. So, I just have been trying to get the message out there!
What you’re doing is a wonderful thing Laura! Keep at it because you are making a difference.
You are not alone. I thought I was the only one with that chronic transformed daily migraine, post traumatic stress disorder and chronic depression problem. I have been dealing with this every day all day long with never a break for 11 years, 10 months and 11 days. I have been turned down for disability the entire time and been homeless twice, lost a husband to divorce and his addictions, lost my family due to thier misunderstandings of my illness- I dont look sick so I have to be making it up right?. I am married to a nice man and live in Scandinavia and am still trying to get my problem recognized by the American disability board. I am allergic to most pain medications so I take large doses of opiates every day to try and cope with the pain. Those work sometimes.
I cant tell you how relieved I am to know I am not alone any more. Can anyone share thier experience about getting disability? Mine has been a constant nightmare of them blaming me for my illnesses and refusing to pay. I am not an alcoholic, drug addict – except for what the doctors give me I take nothing else but vitamins, I try to exercise and eat properly and get endless amounts of a hard time and would love to hear how others cope.
Thank you!!!!
Hi Laura! I’m so glad that you were able to feel validated through my post. There are millions more like you in the world, many who feel that they don’t have a voice. I pray that you are doing well. I understand your frustration with the disability process. I was only partially awarded back in 2008 and have appealed their decision. I still haven’t gotten a decision back yet and it’s been 4 years. I believe I only got the partial award because I had a lawyer and because the judge at my hearing was an insensitive prick who basically made it seem like I shouldn’t have had my children if I knew I had migraines. He was a complete butthole. I almost broke down in tears. It was a horrible hearing. Social Security is a terrible system and we suffer because of it. I would suggest that you research the best disability lawyers and pick one to represent you. The outcome is more in your favor when you have a lawyer. I picked a bad law firm and they don’t ever contact me. Don’t fall into my predicament. I wish you the best of luck and I’ll continue to pray for you.
Sorry, I meant to say Christine!