What it’s like living with an invisible and chronic illness? This isn’t going away. It will be with me until the end.
So a few weeks ago I had another Reiki session with a new Reiki Specialist.
“You are not your disability. You are strong. I feel the strength within you”
We spent a while talking about judgements and the judgements placed upon those with disability and how it’s difficult for many to look past a person with a disability. Then on the other side how it’s difficult when a disability is invisible how it can easily be dismissed that it actually exists.
I adore Reiki, it seems to shift my perspective by shifting something within me. I had my first session a couple of years ago and if I’m honest I only had a session because the lady had a half price offer. I went into the session with little belief in the power of Reiki. I came out feeling completely dumbfounded with what she had discovered. Some of it very personal and most of what she said I will not disclose on my blog. It will stay in that room between me and her.
I have an autoimmune disorder. It means that my once healthy and working well immune function now attacks my healthy joints. It can attack them to the point of destruction over a period of time. 10 years on and I feel blessed that at present I’m in remission.
When I first went to my Reiki sessions it was a different story. My whole system was out. I had swelling in my knees, ankles, wrists and hands. The pain is of that to having a hammer bash your joints constantly. And though it was bad it was not as bad as when I was first diagnosed when pretty much every joint in my body was affected. I was so weak that I couldn’t open a door handle or pick my young daughter up or even tighten a juice bottle. I felt helpless and very unsupported.
It is difficult when people see you when you are having a flair up and the comments I’ve had have been absurd and I would like to clear a few points up. Not because I’m bitter about the lack of knowledge but because clearing these points up is like a form of education. Very rarely people understand something about an autoimmune disorder until they experience it or live with a loved one who suffers.
So let us clear this up. I have Rheumatoid Arthritus. And when first diagnosed I was horrified. Arthritus is something old people get? Right? Wrong. Rheumatoid Arthritus, Juvenille Arthritus and other forms of Arthritus are not prejudice against anybody, even age.
This took me a while to mentally digest. Infact it has taken me many many years to mentally digest.
“Did you get it because you didn’t wear a coat when you were a teenager?” One person asked.
“Did you get it because you are slim?”
“You can’t have that, you are too young.”
“Gosh I bet you wish you were dead?”
“Why don’t you put your head in an oven?” Somebody else asked.
These questions were asked when I was at my lowest and first diagnosed. Three children under six years of age. At the time I sought strength from my Specialist.
“I will get you as better as I can.” She promised. “These people saying this too you. I bet they’re fat and ugly.” She joked.
Looking back, she made me feel so much better. Just by listening.
You do not get Rheumatoid Arthritus because you are slim. It mostly occurs in those who are overweight.
You certainly do not get Rheumatoid Arthritus by being a teenager who refuses to wear a coat.
Like I say. Rheumatoid Arthritus is not prejudice. It can strike at any time. And when you have it, it’s a constant battle of good days and bad days. Some days obvious, other days it looks non existent. It is complex and difficult to understand.
Infact to begin with Rheumatoid Arthritus shouldn’t even contain the word Arthritus. It’s a disease and it has nothing in common with the 80 year old lady who has Osteo-arthritus or Aunty Jane who has a touch of rheumatism in her knee that is worse when the weather is cold or damp. Weather when it’s hot or cold makes no difference to the pain level. I am not a weather clock. Personally I think it should come under the name Rheumatoid Immune Disorder – because that is what it is. It is the immune function that is at fault. Just like Diabetes and other Autoimmune diseases.
I understand my disorder. I live with it. For me, emotions play a big part in the flair up. And I’m an emotional person. Hence why Reiki works. I was dubious but I now know that for me it works. And that flair up is more than painful joints. It’s pain and weakness throughout the entire body. Weight loss, depression and anaemia occur because it’s a systematic disease not bone wear and tear. Depression, again the emotions. Those symptoms are worse than the pain itself. That can happen over time but thanks to the many modern medicines that is limited. 10 years on and my joints are in great shape, considering.
You see, sometimes it’s not just the pain of living with a Chronic Disability that is destroying. It’s the mental torture on the emotions and the comments not only from strangers but from loved ones. I’ve lost many relationships due to this condition but on the positive I know that those who are with me now are really with me and not pushing negativity down my neck. I am not my disability but I’m human and sometimes I need a bit of support until I get back up, but over the years I’ve mostly gone solo. I’ve been a single mum, landed in serious amounts of debt, raising children with little support. But I’m strong enough to know that I will and do and have got back up. It just takes time. Sometimes a little bit of self kindness. That way the challenges do make you strong. t is so true what they say. As a friend put it. We wobble until we balance.
I was an active young lady. In the sense that before I was struck down I walked as often and everywhere as I could. I’d go to the gym, aerobics. If it was exercise on offer I was there.
Upon being struck down I also had to contend with the mental torture of still being young and not being physically able. This was soul destroying on the emotions. When my condition became controlled it was relief to be active again. And I won’t lie. For vanity sake, I adore high heeled shoes. Who wants to walk around in trainers for two years when you are only 28. I did. But it only makes me love my high heels more than ever now.
“You’re a runner.” The first Reiki session lady told me. “You are grieving not being able to run.” I thought about how I used to pound the pavement. I immediately burst out crying, I so wanted to run again, this had been playing on my mind. It has been a long journey since that session. I’m running again. Not like I was but I can run. And yes I do partially hold the Reiki treatments that I have as responsible. They shift something within me. They make me feel strong. My medication has been reduced and I regularly walk 6-8 miles a day. I believe for me that my condition is exacerbated by the emotions. Walking helps. It’s like a form of meditation. When my emotions are out of control, my immune system falters then my joints receive the impact. The pain has to be released through the body somehow. My body was holding a lot of emotional pain.
Unfortunately the young lady who conducted my first, second and third Reiki Session has moved away. I therefore decided to see somebody else. Again the session was a complete success. This time I went to visit him more out of intrigue and to see exactly what he picked up. Bear in mind that my condition is in control and that my drugs have been lowered for the first time in 10 years. My weight is good (I’ll always be slim it’s the way I am) and there are no signs of anaemia. I didn’t tell him about my disability, it is not obvious, it’s invisible, dormant in my body.
“You are not your disability. You are strong.” He said. “A very strong woman.”
I therefore think back to my initial diagnosis and the journey since. Things happen for a reason in this life. Sometimes those things are difficult. But there is no doubt if it doesn’t break you, you come out of the other side much stronger. For that reason I actually thank my experiences for making me who I am. And that is why I can move on in life with a condition that destroys many people’s lives and I can see why it does. But for me, I know I’m not my disability, the more it attempts to fight me, I fight back. Because I want to be happy and live the life I planned before this condition attempted to destroy me. And living the life I planned is exactly what I’m doing. Even if it meant taking a few detours here and there.