How to Give an Ill Friend Love, Understanding, and Support
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September 17, 2009 by admin
Filed under Christian Resources, Guest Bloggers & Articles
I have lost many friends since developing Fibromyalgia. I don’t know why they have chosen to abandon me in my time of need, because they did not tell me. I can only assume it was because being a friend to a chronically ill person is difficult. But it doesn’t have to be! I don’t ask for much; just your love, understanding, and support.
It’s ok to ask me how I’m doing. However, I’m not going to lie and say I feel “fine” just to make you feel better. I’m not fine. I don’t feel fine. I’m not doing fine. I hurt everywhere, I can’t sleep, and it depresses me. But it’s still ok to ask me, because it shows me that you care.
Please, please don’t ask me if I’m getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It’s all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts.
I beg of you not to tell me that I need to exercise more or to just “walk it off.” I do what I can – light stretching, moving around, and now even water aerobics. It’s excruciatingly painful. Unless you can feel my pain and understand exactly how my body reacts to every movement, unless you have Fibromyalgia as well as the myriad of spinal conditions from which I suffer, unless you are me, you have no idea what will make me feel better. My son does the best he can in this area, but he doesn’t tell me what I should do to feel better. He asks if there is anything that will help – “Will a bath help?” “Will an ice pack help?” “Will your heating pad help?” “Will your TENS unit help?”
I’m not asking for your pity. I’m asking for your understanding and compassion. If you really want to help me, just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective. But one happy or funny moment could change my day. However, saying nothing at all, not even trying, can hurt me deeply. I am, after all, human.
If I’m crying, it’s still okay to talk to me. I don’t cry (much) from the pain. I mostly cry because I’m stressed out, exhausted, overwhelmed, angry, feeling emotional, or just plain frustrated. Sometimes it’s just one remark that sends me over the edge. At any rate, I cannot control this any more than I can control the weather. Again, I only ask for your understanding and compassion.
In short, don’t avoid me because you don’t want to deal with my issues. I won’t force them on you and, for the most part, won’t even mention them until you ask. Unless you’re my Momma. I seem to unload all my pain and symptoms onto my Momma because she’ll actually listen to me and not judge.
Which brings me to my final rant: don’t judge me. I don’t have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.
Keep in mind that Fibromyalgia it is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. But, please, don’t tell me that I take too much medication. I have ONE doctor prescribing this medication to me, we review my prescriptions every time I see him, and, as he spent years in medical school to become a doctor, I trust his opinion. Leave my medications to him, as he knows what he’s doing and has my best interests at heart.
I can understand that maybe some feel FMS is not such a big deal. After all, it’s not cancer. It’s not heart disease. So, it’s not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. Dr. Jack Kavorkian assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don’t say this to fibro sufferers. This is not a harmless disease.
While people who do not suffer from Fibromyalgia, Chronic Fatigue Syndrome, scoliosis, or any other invisible chronic illness may have a lot of advice for those of who do, we ask that you, unless you are a doctor or pain management specialist in the treatment of these diseases and disorders, please keep it to yourself. We are doing the best we can to manage with what we are given. We don’t want your advice; we don’t want your pity. We want your love, your understanding, your company, and your support.
National Invisible Chronic Illness Awareness Week is essential to help those who do not suffer to understand; and crucial to those who do suffer to find camaraderie.
Jessica Barto has suffered from symptoms of FMS and CFS since she was a teenager. Was diagnosed with Spondylolisthesis in 1993, and FMS in 2007. She invites you to visit her blog, Fibro Blog.
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#fibromyalgia How to Give an Ill Friend Love, Understanding, and Support : Invisible Illness Awaren.. http://twurl.nl/tfqred
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How to Give an Ill Friend Love, Understanding, & Support : Invisible Illness Awareness Week http://bit.ly/14ZKnA via @AddToAny. PLEASE read!
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This is a GREAT blog post. I wish I could ask every one of my friends and family to read this. But for now, I'll just Tweet about it! Thanks for sharing this with us.
@FMSlife is our guest blogger 2day 4 #iiwk09 “How to Give an Ill Friend Love, Understanding, & Support” http://ow.ly/pn7n
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How to Give an Ill Friend Love, Understanding, and Support …: … from Fibromyalgia, Chronic Fatigue Syndrome,.. http://bit.ly/19bcfV
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Very good article. I hope that this week wakes some people up.
Reading this has made me cry because it's my story too. Although I don't have FMS, I have chronic daily migraines (the bad, vomiting kind that leave me panting in pain and dehydrated). Sharing your story is courageous. I have suffered through the loss of most of my friends and family because I am so sick and there is no "getting better" (although I still hope). Namaste — Gyan
Hi TheDailyHerb, have you tried Topiramate (sub for Topamax)? I know meds are trial & error & everything works differently for everyone, but my Neurologist suggested & the daily migranes I used to have are long gone & its amazing!! Be Well
Thank you so much for the very informative article! I don't suffer from fibro, but I do have chronic intractable pain in my lower back, neck and arms. Due to this also being an invisible illness, I have encountered so many people who I can "just tell" that they don't believe I suffer every minute of every day to varying degrees. I have good days (few and far between), bad days, and very very bad days. I even have a sister that doesn't believe that I have anything wrong with me (even though I have an intrathecal pain pump for my lower back & a spinal cord stimulator for my neck and arm pain-hmmmm must have gotten them just for fun!?!?!). It hurts more than I can put into words that she NEVER asks me how I am, not even in a general conversation; I've never even really talked to her about it, so it's not like she's sick of hearing from me. I think I can count on less than 5 fingers the people who even care enough to care! Anyway, I just wanted to compliment you on an excellent article, and thanks for helping to get the word out!!!
what a relief to have my feelings and thoughts so elegantly created. i do miss my old friends and find it hard to understand why i am left out now that aging and illness has made friends so much more precious. thanks for the article.
What a wonderful article. Just know, you're not alone. For me, though I do miss old friends I have created many new long lasting friends who truly care about me and my special needs. They accept me for who I am.
Thank you for a beautifully written article.
This is beautiful, Thank you so much. I have Ehlers Danlos Syndrome and Fibromyalgia. I feel this way every day of my life. It is so discouraging to deal with other people and even doctors who do not get it.