We were discussing the possible side effects of a tetnus shot, and she said I could take some Advil for the soreness I’d probably have in my arm. I said that I’ve had chronic pain since I was a kid, so this wouldn’t be so bad for me by comparison. She seemed truly sympathetic. We continued to chat as she gave me the shot, and I said something about how what I have is sort of like fibromyalgia. I saw the glint of recognition in her eyes. I thought she must see a lot of fibro patients, but then she told me: her sister just told her yesterday that she was diagnosed with fibromyalgia.
I didn’t know this woman. Come to think of it, I never got her name. But we spoke openly and honestly. I told her that the hardest thing for many of us isn’t the symptoms. Those are horrible, yes, but even worse can be when we’re doubted. Doctors think we’re just looking for medicine or attention. Relatives think we’re pretending or exaggerating. She told me about her rocky relationship with her sister, but how she still wants to be there for her. She told me that her sister had complained of symptoms for years, but she never took them too seriously. I told her that being supportive is the best thing she can do. There’s no cure for fibro right now, but there might be ways to help mitigate the symptoms. I mentioned having people around to help and maybe changing her diet, and how she would need support for all of it. I told her about going through the five stages of grief.
I worried that I might have overstepped what’s considered a boundary between two strangers. I apologized for saying too much. She stopped me and thanked me. “I’m so glad I met you.” She said it more than once before I left.
The entire exchange lasted only minutes, but I think I might have helped both this woman and her sister. At least, I hope I did. And when she seemed surprised that this total stranger was trying so hard to help, I told her how hard it can be, especially when someone is first diagnosed. I said that I wished I’d had someone who’d gone through it to help me, so now I always try to help others. After all, we autoimmune folks need to support each other. We need to be there for each other.
My family still doesn’t quite believe me, despite 1) two positive Lyme tests 2) a bunch of MRIs showing degenerative disk disease 3) the fact that my mother has Hashimoto’s and fibro and my father has serious allergies, so some of my issues are genetic and 4) my two hand surgeries and four endometriosis surgeries. It was easier to convince Social Security than my family. You are so right–the most important thing a family member can do is be supportive and not minimize symptoms. Also, family members should ideally refrain from commenting about things like how many supplements the chronically ill person takes, what the chronically ill person eats/doesn’t eat, and any alternative treatments the chronically ill person is trying.
I’m sorry to hear that your family has been so unsupportive, Miss D. I hope that you can find comfort in friends and other spoonies who know what it’s like to go through this.
Thank you! Some friends have been wonderfully understanding and others just stopped calling. I find it takes another spoonie to really get it. I do get tired of educating people.
It is so great that you spoke to that woman so honestly about your situation to help her sister. Sometimes I get scared to reveal too much or get too personal with a stranger about my medical conditions, but I have realized too that by opening up sometimes I can help someone, and someone can help me as well. I have a hard time finding people with the same condition as me in the ‘real world’ but I have found so many great ‘spoonies’ online that have been so supportive. There was one time I met a new woman working at my mom’s work that had chronic migraines. Boy, once we started talking, we couldn’t stop. We both wanted to help each other somehow. It is so true, that we are all in this together with any chronic illness. It is crucial to have that kind of support. Thanks for sharing, you did a great thing!
You probably helped your mom’s coworker a lot just by sharing your experiences. Sometimes you don’t have to open up a lot, just a little, to really help. For me, how much I open up just depends on my mood. I hope you can find a level you’re comfortable with, too. I don’t know people who share my conditions in real life, either – gotta love the internet!
I hope I did. I know exactly what you mean by just opening up enough. Funny enough, the other day i went to see an inspirational speaker who has gone through chronic pain and I asked him what he did to help him through his pain, and there was a bunch of people around him waiting to ask questions as well. After I explained what I was going through, there were 3 people that came up to me all trying to help me. One woman said her brother suffers from cluster headaches. Another man told me about a free tai chi course he offers. I was amazed that just by opening up, so many people tried to help me out. It was a nice feeling that I have never really experienced before; help from total strangers. 🙂
That’s fantastic! I’ve found that just like I always want to help others dealing with similar health issues, people also want to help me. So opening up works both ways. I’m glad you had such a great experience!
[…] other day it was Amy. Last month it was the woman who gave me my tetnus shot. I can’t help everyone, but I’ve decided to label myself a “chronic illness […]