I am as ‘girly girl’ as they come. You will not find me at the store without make up and you sure will not find me at Wal Mart with my latest pair of pajama bottoms on! Because I am now fully disabled, I do not get out much. All the same, when I do go out, I want to look nice. I am making an assumption it is for this reason that is why, on more than one occasion, I have been approached by someone telling me I am parking in a disabled zone. My response, “Yes, I am aware of that and if you look, you can see my place card” (as I try to contain the urge to give them a mouthful about how not all disabilities are able to be seen with one’s eyes). Each and every time there has been an embarrassed shuffle of, “Oh… um, er… I did not see it… sorry…..”. The last time this happened, as I walked toward the store (gait intact!), I looked back and did indeed state, “Not all disabilities are visible!” That would be our world, the world of Fibromyalgia as well as Lupus, MS and a host of like invisible illnesses.
So what makes Fibromyalgia so invisible? How does this affect the fibro patient? What are some of the things we…. the fibro patient go through in silence, game face smile, ear to ear….. as we face the world where everything we do takes us twice as long, is twice as hard for us and we usually either are not believed or at the very least are judged/questioned about our condition. The following are some things I consider very important regarding the invisible part of Fibromyalgia:
1. WE DO NOT LOOK SICK/CANNOT TAKE A BLOOD TEST/SCAN TO ‘SHOW’ WE HAVE FIBRO: Most fibro patients look just like everyone else. Unless it is first thing in the morning (when we are getting out of bed and having morning stiffness) or those of us…. myself a two decade veteran with a gait that can be quite detectable at times…there is no way to ‘see’ fibromyalgia. Many posts ago, I wrote a post about “The Faces Of Fibromyalgia”. In that I used random pictures from the internet, and even included a picture of myself. The people were women and a man. All were different ages and races. While women are the biggest population to get fibro, they are by no means the only people out of the general population to get Fibromyalgia. Men and even children can and do get this condition. A few weeks ago I was speaking to a fellow fibromite and found out a relative of hers was diagnosed as a child. He is now a young man but he is both male and diagnosed approximately around the age of nine with Fibromyalgia and other sister conditions. This condition knows no limits or boundaries and does not wear a sign that shows the world “This person is one of the faces of Fibromyalgia”.
2. TWICE AS LONG / TWICE AS HARD: It takes someone with Fibromyalgia twice as long to complete any task. It does not matter how mundane the task, it does not matter how simple the task. If I do not have Paul to help me get out of bed for instance, from first morning it can take me up to five minutes just to get out of bed. I will not list every routine, but even showering and getting ‘ready to go out’ (meaning a Doctor appointment or quick errand) can take up to two hours. Any little errand, even going to the store to pick up a can of soup, seems to be such a huge, overwhelming undertaking! That is why people that quip, “I have to deal with my pain and just push through it“, do not realize how their words hurt and sting. Your pain is not my pain. IF you can push through it, I can tell you right now, you are not where I am. Sure, I can push… maybe one or two days. But I will ‘crash and burn’ and ‘hit the wall’ and be in bed for two or three days or worse, just collapse. If you take away no other words from this section please take these words under your hat: Everything I do, from getting up, to showering to blending my morning smoothie to even hobbling around the house at times takes a tremendous effort. Because I refuse to just sit and watch TV (and I took heat for allowing myself a one hour break a day for my one guilty pleasure, my one show I watch a day, unbelievable!), I push in the way I can without bringing injury to myself. I try to stay busy to the best of my ability. Sometimes busy is sitting at my computer and writing. When someone pays me to do this, I will gladly turn in my disability card. Until that happens, there is nothing else I can do. This thing has me, but I don’t wallow in self pity, I really do try to balance what I can do with what I know is too much. Being told we are not trying enough or just need to push through it only makes us feel worse about the hand we have been dealt than we already feel.
3. The Co-illnesses You Do Not See: It saddens me how much my gut dictates my life to me. I have almost become a shut-in due to this. IBS is one of the most common co-conditions of Fibromyalgia. Nausea and other stomach issues do not rank far behind. As much as I hate to, if I have something planned either at my house or away, you will usually find me packing away 4-6 Imodium the night before as a precaution. Phenergan (promethazine) has become one of my favorite meds (and no, it does not make me drowsy, likely because I have built up a resistance to this common side effect). Sometimes I have to back it up with Dramamine (OTC)! Stomach issues abound! Senses in overdrive are also not seen. Sights, sounds and smells all overwhelm me! I am misunderstood! Recently at a baby shower, where used clothes in good condition were stated to be welcomed on the invitation, I told the Mother to be, “The little sleepers I got with the tags… from Target… were from Goodwill!” The tone in my voice must have been misunderstood, because I meant it to be in a “isn’t that super cool! New Target sleepers at Goodwill price… meaning I could get the Mom-to-be MORE because I had more in my budget!” She said, “It’s alright!” as if to calm me. I feel so misunderstood because that is not what I meant and with my senses so out of balance I feel like I cannot get my bearings, especially in large groups. The best way to describe this: Everything is AMPLIFIED for us: sights, smells, sounds (crowds sound like they are turned up to a super high volume on a speaker), tactile, etc. However, we say nothing. We suffer in silence because we know if we try to explain this we will either be seen as ‘weird’ or some kind of ‘attention seeker’. This is one of the worst things that remains invisible for us. It is also the most misunderstood.
4. Fibro-Fog: This is one we fibromites try to hide but it is difficult at best. People try to blame it on our medications (remember, I have hearing like Superman and no matter how much your talking behind someone’s back is meant not to get back to them, it always does. Remember too, karma exists and is alive and well). For the record, I am less medicated than I have been in years but the fibro-fog is worse than ever. A good example is Paul and I watching a movie the other night. Now even Paul will admit this movie was a bit hard to follow. Nonetheless, we had to stop this movie probably every twenty minutes so he could explain things to me. I have to rely on him a lot to explain things to me from news articles to things people post to me on social media. Like the person that stutters but can sing, I seem not to suffer when it comes to writing. I feel blessed beyond words regarding this and pray this stays intact. It hurts when people jump to conclusions regarding fibro/brain fog. Perhaps they would be better suited researching it before they make judgements.
5. Anxiety & Depression: If you are not a fibro patient or do not suffer from anxiety or depression, try to imagine hurting, 24 hours a day 7 days a week. Now try to imagine that even the most simple of things take you twice as long to complete as a person without this issue. Now imagine your mind is full of cobwebs because of fibro fog. Now imagine everything was turned up the the highest volume. You would be anxious and depressed too! I guarantee it! The stigma attached to both of these conditions alone is not exactly great. Add Fibromyalgia and its assorted co-conditions and I really do not need to elaborate.
5. Game Face / Putting On An Act : I think the best thing to sum up everything is to say ….. speaking for myself as well as basically every fellow fibro friend I have known…. we put on our best game face. Sure there are some “Whiny Winifred’s / Walter’s” in the crowd, but you get that in the general population. I have made many friends online with fibro and many with co-conditions such as MS, Lupus and other connective tissue and auto immune disorders and these friends are the bravest warriors I have ever met in my life. Two of my closest friends….. friends I truly believe God led me to….. are amazing when it comes to being supportive. Yet these two ladies have every reason to actually need support. Yet they give and give and keep on giving. I too find that by writing and supporting others it helps deflect and take my attention away from the monster within that creates this overwhelming pain and fatigue. For those that do not suffer from chronic pain and fatigue, when you see a friend who does that person is smiling and laughing, inside we probably are hurting very bad. But we do not want to be a “Debbie or Donny Downer” so we carry on.
Having Fibromyalgia and Chronic Fatigue Syndrome is difficult….. that being an understatement. Many of us have other issues to also contend with. Everyday our body dictates what kind of day we are going to have. Our day can vary from sleeping all day to being fairly productive and organized. Sadly, for those of us to the point of being disabled by this (and possibly other conditions), we never know what kind of day we are going to have and even if we have a good day we know we can not sustain this kind of day on a regular basis. What we can do is find a good Doctor and follow their protocol. I recently switched Doctors and have some hope. I will remain disabled, but I have hope of getting my pain levels down to a more tolerable level now. We can eat a healthy diet of as many unprocessed foods as possible, try to get as much regular sleep as possible and try to exercise within our capabilities. For those who do not have fibro, you can simply have compassion and try to understand what our world is like. Oh and one more thing, with Fibromyalgia and Chronic Fatigue Syndrome, there is never a “One Size Fits All” treatment, outlook or ability level for anyone. Until Next time, K.