I got the diagnosis for fibromyalgia after two years of suffering with chronic pain which started in my back. When I was at the peak of what is my now, "retired-ish", career as a massage therapist, I had sometimes 9 appointments in a day, with no breaks. Massage being highly physical, I would get home from my shift, arms shooting with pain, shoulders aching from the bursitis I had developed, and literally fall on the floor. Naturally, instead of leaving my highly physical job that was hurting me, I coped by numbing.
I didn't want to acknowledge or believe it, because I didn't have much primary support in my life to face it. My doctor provided me no information or follow-up for support groups or anything of the like.
As I look back at the last several years, I notice that in getting my diagnosis for fibromyalgia, has stages with it, similar to what one would expect in grief.
I could say I was grieving for the person I used to be with the different abilities I had. The first stage was denial- which took the form of lots of wine and avoidance. The support of people who understand what it's like personally is so important for after a diagnosis of anything. Outside of family and friends that are supportive who try their best to understand, we need a community of people, online or face-to-face, who recognize the pain we know.
So instead of branching out, I crawled inward and was severely depressed. It got exasperating. We all know the most frequent suggestions, "it must be something else", or "maybe it's just that you need this supplement, or that exercise", eventually I felt defeated with doctors caring or people understanding and started to believe that maybe fibromyalgia was a curable thing! . . . Maybe I really do need to just get over myself, take some turmeric, and it'll all magically go away!?
I do not downplay the incredible benefits of natural supplements or even pharmaceuticals, but they do not cure fibromyalgia. FM is a life-long condition which is manageable with lifestyle changes and help from many different disciplines and self-education. And anyone that claims they have a cure, is just there to make money. Those are the facts.
In the next years, I would say I moved on to the next stage of grief. I got angry at my pain. I didn't want to feel limited in my physical abilities. I would hit the gym aggressively, and work out way too hard... doing circuit and HIIT training. (If you don't know what HIIT training is, it's pretty much running 'til you're blue in the face). I would act like I didn't have fibromyalgia, because I was too focused on getting an awesome figure, and being that inspiration that I saw all over insta. I was trying to meet an unspoken expectation that I had seen placed on people with disabilities, overcoming pain and weakness. This was my daily façade- ignoring the pain and pushing past my instincts that told me to STOP. I would be in so much pain and not tell anyone. Not feeling inside like I looked on the outside, resulted in major isolation. People would comment on how healthy I looked, but they didn't see the bags under the makeup, the panic attacks and random bouts of crying. I didn't have any friends I could talk to about my struggles, and my family just encouraged me in the best way they knew how. I felt alone most days. Here are just some of the ways I helped myself out of a dark place and have been able to cope better with a diagnosis of FM. Just like grief, you never are fully "over" losing what you are grieving, you just learn to cope. Although I am still in the process, I have a few things that have helped me cope better and manage my reactions:
1. Seek some level of support on a daily basis.
Whether that is chatting with someone on a chronic illness feed, a friend or family member, or your snobby cat. Have something that provides you space where you can be you and find your voice. But before that, may I make a suggestion that has worked for me. Have a reserved spot every morning, before you start your day, even if it's five minutes to write. If you're like me, you wake up with extreme stiffness and aches. I've found that for me, some mornings it helps if I just grab a pen, and write how entirely crappy I'm feeling, head to toe. This is aching, this has shooting pain. I slept horrible. Brain fog. It may feel like you're complaining- but you don't want anxiety and pain taking up real estate in your brain for the rest of the day. And you also don't want to risk dumping on someone. If anything, you're getting the monkey off your back first thing in the day, supporting your need to vent and moving on mentally, even if physically you don't feel different.
2. Feel the feelings.
I know this is so cliché, but it's true. You can't stuff down or ignore something like a diagnosis. Grieve your used-to's. Hard. Write down all the things you miss doing or abilities you took for granted. Then try to move onto gratitude. Each morning after writing all the things that feel horrible physically in step 1, write 5 things every morning you are grateful for. Many of my favorite authors use this tool and it has helped me immensely.
3. Give it a rest.
I see you there, yes you. Binging on podcasts, self-help books, etc. Although I have so much love and respect for self-help and motivational speakers, I think that for the chronic illness community, particularly people that are limited by pain conditions... self-help can quickly turn into self-harm. By that I mean, with chronic pain- don't push yourself to a breaking point. Rest is a bigger tool for you than pushing yourself in both the gym and at the office/school. It doesn't mean you are weak or lazy if you don't have a degree, a squat booty, 500 kids and a book deal. And in fact, stop while you're ahead and your head is clear to say no. I think that with all the self-help I have listened to over the past years, many have something in common, and that is to PUSH yourself to the edge of all abilities, skills and productivity. I felt like some days I could become a motivation monster from all the self-help I was pumping into my dome! Sometimes we need to give it a break, and be silent with our own thoughts and learn how to help and heal ourselves. There is so much information out there. How are we to process it all? Sometimes the best answers can come from just sitting and writing what pops into your own head.
The final take-away here though is: What is the harm in using things that those before us had to fight for? There is a reason these amenities exist, and they are for people like you and I.
4. Use public services that are offered to you.
It's worth being said, that many of us chronic illness patients have a hard time asking for help. There is a level of independence we want to keep, and do not want to feel like a burden to our loved ones. A way to remedy this feeling of burdening others, is to take advantage of what your school, job or community offers. I personally take advantage of accommodations at my university for testing. I also recently started using a cane, which I know will help others better see the limitations I have. And it helps me get around on bad days. Where is the harm in using things that those before us had to fight for?? There is a reason these amenities exist, and they are for people like you and I.
5. Get some crack.
There's nothing better than a good crack at the chiropractor to release some pain. As well as massage. I cannot begin to stress the benefits of regular massage. However, if you're not in a place financially to get a massage or acupuncture- a visit at the $25 chiropractor will help some.