Posted in Chronic illnesses, Fibromyaloga, Invisible Illness, rheumatoid arthritis

When You Can’t See the Pain

Millions of peoples with chronic illnesses suffer alone because their families, friends, coworkers and even doctors don’t believe they are sick because they do not “look” sick. If you suffer from a chronic condition, you have heard it all – if you exercised more, ate healthier, lost weight, or that it is was all in your head.

Suffering from two chronic pain conditions, I wake up every morning like I have not slept. I deal with sharp stabling pains in my joints and muscles all day. It hurts to sit and it hurts to stand. It is exhausting just to go up a flight of stairs, and my brain is often foggy, so often that I can forget the same route I take everyday. I deal with headaches, stomach issues, sore joints, and even sore lymph nodes in my neck and arms. I have been told by doctors that it is all my head or that my blood work is normal. I have taken too many sick days at work and my family and my friends do not realize the extent of my conditions, and they think a vitamin will make me feel better or better shoes will my feet feel better. (If I hear “why are you limping” enough times, they won’t know where to find the bodies!)

Rheumatoid Arthritis Guy says RA is his kryptonite, but my kryptonite is suffering alone. I have learned that I must accept the pain as a part my life, but I have a hard time dealing with the ignorance that comes with having Fibromyalgia and Rheumatoid Arthritis. The ignorance is hard to believe considering the statistics. There are more than 125 million Americans who suffer from at least one chronic pain condition, and 40 million of those people are required to limit daily activities as a result. Only 7 million of those people use a cane or walker, thus having a visible condition. The rest suffer invisibly and alone.

Joint and muscle pain, headaches, and other invisible symptoms that are characteristic of autoimmune disorders, are invisible to the outside world. A hundred years ago, our conditions would have been considered “hysterical” or “mad” conditions. (In other words, we would be wearing straight-jackets.) Needless to say, we have evolved in the last one hundreds years.

The first time that rheumatoid arthritis was described in a doctoral thesis was the year 1800. In 1859, the term “rheumatoid arthritis” was used for the first time. The term, however, was not officially accepted by the American Rheumatism Association (ARA) until 1941. The first official criteria for diagnosis of rheumatoid arthritis did not happen until the late 1950s. So I suppose we can cut the American College of Rheumatology some slack. They have had only fifty years to screw this up figure this out so a cure may take a bit longer (I am optimistic, what else can I do?). Anytime soon would be nice!

Sometimes, I feel sorry for myself, like today when I want my chronic pain to disappear, if just for one day. I want to be able to walk in to a grocery store, and not feel like fainting because I have stood for too long, I want to be able to carry things. I want to be able to sleep at night and to actually feel like I have slept. I want to go without meds for more than a day or two, without quickly feeling like I have been sick all my life. I want to remember what it is I was doing instead of dealing with brain fog. I just to feel better for just one day. I want to be able to sit in one place for more than a half hour without getting up to pain in my feet and knees and not being able to move my legs. I want to feel what “normal” is like. I do not want to be sick. I do not want to be doubted about how sick I am or how much pain I am in. I just want to be healthy and I am not. I just want not to feel sorry for myself for just one day!

More than anything, I just want awareness and to rid the world of ignorance about invisible and chronic pain conditions. I want to throw a pity party if I feel like it (Oh wait! That is exactly what I am doing here! Well, its my blog and I can do what I want to!)

In the words of Mr. Krabs:
Krabs: Three cheers for feeling sorry for ourselves! Hip hip…
All (Sponge, Patrick & Squid): Hooray!


7 thoughts on “When You Can’t See the Pain

  1. I totally have "pity parties" and think if you need it, you should go for it. You are a busy mom that takes care of a lot of things while also dealing with chronic diseases. It is okay to take the day off and focus just on you.

  2. This is a great post. It's not great that you are in pain, but a great post in that I can sooooooo relate. People don't see my illness. They don't realize that I literally have a headache every minute of every day. They don't realize a lot of things and it's annoying. So annoying. I wish I could just make them understand but I can't. (((hugs)))

  3. ((((Lana))))We all need pity parties. I understand the feeling of people not understanding. Especially being a very young looking 35 year old, people can't seem to understand that RA has no age requirement.

  4. Yeah, what everyone else said! And then some. Invisible diseases….never looked at it like that. I just know that the RA, the depression and the panic disorder are not something others can "see" by looking at me.So…they think it doesn't exist. bah!

  5. Having a bit of a pity party myself today. I know this will probably sound odd but it helps me to see people struggle with RA.I feel like everyone I know with RA deals with it emotionally so much better than I do. I'm just angry…and I know I have to get over that and I'm working on it…but I'm not sure I'll ever be that person that has RA and has a normal life.And that kind of really makes me sad…Know what I mean?I hope your body gives you a break and you get your one day and much more. 🙂

  6. Lana,Having occasional pity parties goes with the territory, I think. How can anyone suffering daily pain not go into that zone on occasion?After living with chronic illness and chronic pain for 27 years, I can honestly say that I've learned how to minimize my pity party time. That doesn't mean I never have any!After spending countless hours talking with fellow patients in support groups, including the one I led from 2001-2008, after participating in support groups from 1992-2008, after "meeting" all the people I have since I started blogging in 2008… I have learned new coping mechanisms, new perspectives, new resources, and learned about support that I desperately needed. I have learned SO much from others!!Being connected with others who "get it" is vital for me. There are people out there who will NEVER "get it". Trying to get some people to understand is like beating your head against a wall. It's maddening.With people who will be around me no matter what (like extended family) that don't "get it" at all… I just have to deal with their comments/attitudes the best I can and limit face time with them where necessary/possible.With others, I have weeded out toxic people from my life to the best of my ability. "Friends" who simply did not "get it" became former friends. I am too sick to waste time and energy being surrounded by people who are clueless about my chronic pain and other symptoms. So, over time, I have eliminated the toxic people and the naysayers from my life.By doing my best to surround myself with people who are positive, people who care, people who are compassionate, and people who are dealing with similar circumstances… I feel MUCH better than back in the days when I felt isolated, felt like no one understood, and felt downright angry.I still struggle with my illnesses and their symptoms every day. However, after 27 years living with chronic illness I feel a sense of peace now that I never felt years ago.I am 100% with you on the importance of awareness.Struggling with demands of a busy life as a chronically ill person is not easy or fun. I believe that the adversity placed upon the chronically ill makes us stronger.You are strong. You will "find your way". You are entitled to occasional pity parties. We all have them. If you have access to an in-person support group that would enable you to meet fellow patients, I highly recommend it. I met some of my best friends in local support groups. If not, cultivating your friendships with fellow patients online can be a powerful thing too. Some of my best friends are people I have formed intense bonds with after "meeting" them online and getting to know them very well… only to discover they have remarkably similar struggles to my own. I hear your pain and frustration. I am sorry. Try to make time for self-care. It's so important for you to have time to take care of yourself. Whether it's meditating, a cup of hot tea, a long bath, progressive muscle relaxation, relaxing music… whatever gives you comfort. It's so important to make time for self-care for anyone but especially for those of us who are chronically ill.Hang in there, kiddo!! :)Jeanne

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