During my first year of university, I was afflicted with brutal and frequent migraines. Since I already suffered from chronic tension pain, this new development was a devastating blow. I began to experience stroke-like symptoms; I missed classes and struggled to meet deadlines; I shuddered to think what might be wrong; and I refused to reach out.
While I have been able to detect the source of the migraines and manage them well now, I’ve never forgotten how cripplingly disabled I became while under their power. Blindness had always made life challenging, but I’d never been so completely incapassitated by broken eyes. Invisible disability, which so many people fail to understand, taught me a great deal about myself and others. I learned never to underestimate pain, or assume I knew every battle a person might be facing.
Keri suffers from chronic pain–pain that can be far more disabling than any form of blindness, and she’s graciously agreed to share her story with us.
Q: Can you tell us a bit about your life before chronic pain began to affect you?
A: It was nearing the end of September back in 2014, and my life was pretty typical. I was in my second semester of college, I had a great boyfriend, and life was good. I was happier than I had been in a long time, even though I had lost my sister just two months before. I was hopeful about my college studies, and ready for Christmas break like any other typical college student.
Q: When did you first realize something was terribly wrong?
A: It was a Wednesday night, and I was relaxing on my loveseat, and gaming after a typical day of classes. I was happy to be free for a little while from boring things like Experimental Psychology, and to be doing something I love: gaming. Suddenly the calves of both of my legs started hurting. I have a high pain tolerance, but I was almost in tears. I stood up to get a few alieve, thinking it was just some kind of bone pain or some such, but it was no bone pain I had ever had. As soon as I stood, the pain got twice as bad, and if it wasn’t for the loveseat right there, I’m sure I would have ended up on the floor. It was disabling, and the worse pain I had ever experienced. I only made it through that night quite honestly by the grace of God, and my boyfriend staying on the phone with me for a good while, even though I had woken him up. I made it to school the next day, but barely. I could hardly walk, and I felt as if my legs were being torn apart.
Q: What exactly is fibromyalgia?
A: The most common question I get is what is fibromyalgia? The best way to define it in my opinion comes from Mayo Clinic, and they define it as the following.
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.”
There is much research that still needs to be done, and many in the medical community or society in general think it is fake, or something they just tell you when you can’t figure it out. This is the most frustrating part.
Q: Do you feel that your condition affects how you see blindness compared to how you viewed it before?
A: I always felt that blindness was a pain in the ass, and I took the fact for granted that it wasn’t as big of a deal. When the pain started, it really sank into me how blindness isn’t as disabling as it seems. Sure I handled it well, and accepted my blindness, and it has its very frustrating parts. It is a piece of cake compared to pain.
Q: Most of us are already acutely aware of how hard it is to find work when blindness is present. Do you know to what extent your pain will limit your employment opportunities?
A: When people first meet me, or if they don’t know me well they always say things like you are so amazing, or I don’t know how you do it. If and when they find out that I suffer in pain constantly I think that perception may shift.
Q: Does being called inspirational bother you, especially when these terms are applied by people who have never dealt with what you experience every day?
A: Yes it does. I don’t feel that I’m inspiring at all. I have been dealt an unfortunate hand in life, but I make the best of it. I’m just a woman doing what it takes to survive, and make it through. I do the things I want or need to do.
Q: Do you have any advice for others going through chronic pain?
A: My best advice is to have a great support network, because you need it. You need those who can deal with the ups and downs. Find good doctors who listen to you, and who can help you find a pain management plan. Try anything you are comfortable trying, because each case is different. If you are in school be honest with your professors, or if at work, your boss. Sometimes these people can also be a great support network, and help with accommodations. The best advice is take me time, because if you don’t you can never re-centre yourself, and sometimes that really helps with the pain, especially if you are stressed.
Q: Finally, if you could say one thing to nondisabled people who don’t understand you, what would it be?
A: Have respect. You never truly know someone’s problems until you have been in their shoes. Try your best to not pretend like you know what they’ve been through when you haven’t. Be as flexible and accommodating as best you can. We are just normal people, with differences, and we should be treated like human beings.