I don’t know why but nothing annoys me more than people who run around saying “I have (insert disease name), but it doesn’t have me!”.
I can see them now glowing and sprouting these pearls of wisdom as though it was a tribute to themselves. I personally don’t find the saying, or the meaning behind it, useful in my life and my experience of life since being diagnosed. Here is why.
When I first started displaying signs and symptoms that something wasn’t right, it was very much my intention to cover up, hide, disguise and mask as much as I could. I told no one, and I mean NO ONE. Look at what I had to risk! My job, my friends, my relationships, let alone all the people who would start to think I was a mental case or start to doubt my integrity!
I started imagining how people would value me much less if I could not be physically active or reliable as people needed of me… So I pushed myself harder. I made up excuses and I even managed to convince myself that it was all in my head and things would get better soon; But it didn’t.
After a very long ‘cat – and – mouse’ game with my body, my job, my life and my symptoms it all started to get worse and overtake me. My lovely little denial game seemed like it was always destined to fail, and it only made things much harder to manage and to treat in the end.
Over the past decade I have heard so many cliches (and even said a few myself) that I could scream. People will constantly come out with priceless advice and tell me what I SHOULD be doing, THINKING and FEELING about my life and my illness but it is easy to say when you are not in someone else’s shoes.
People tend to think that because they may share a similar diagnosis as you, that they know exactly what you are going through and have the same level of struggles as you. But they don’t. In fact, one of the most shocking thing about Autoimmune patients is that we rarely find someone who has EXACTLY the same symptoms, difficulties, circumstances, reactions, flares, relapses and prognosis as ourselves. We are all so very, very different.
For those that say “I have x disease, but it doesn’t have me,” I am glad that those people are in a position where they are high functioning enough that they can still live some semblance of life and enjoy various things that makes them feel still very connected with their former life. For many people though, this is NOT the case. For many people they need a great deal of assistance and care to do even the smallest of things and telling those people to ‘not give into their disease’ is not helpful and even offensive at times.
I don’t need to be told that I am giving into my illness when I need my husband to help dress me. I don’t need it implied that I am mentally weak if I can’t walk without my wheelchair. In fact the very best thing that I did for myself in the past decade was finally accept who I am now and what has happened to me. I accepted that my life has changed and that I now have to change the way I look at it to make sure that I still feel like I have a life!
Acceptance, not denial, has made me able to connect with so many people. In fact, I find that I was able to think of ways of helping people and touch more lives when I embraced my life now (pain, agony, warts and all) then when I was still trying to live up to these useless cliches and damaging slogans.
After I truly embraced who I am and accepting my diseases as being a PART of who I am now, my new identity, I am finally free to give myself the respect I deserve and make a peace within me. I have even been able to better advocate for myself with my doctors who once ignored me and dismissed my suffering.
No I will not let myself believe that I have lost all the wonderful things INSIDE myself even if I must learn to share them with a broken body. I like myself and respect myself now more than I ever did as a ‘workaholic’, ‘trying to please everyone’, ‘ladder climbing’, ‘go big or go home’, ‘if it doesn’t hurt your not pushing yourself enough’, ‘stay young and sexy’, angst ridden thirty something.
Today I am able to say that I DO have diseases and I am proud of who it helped me become.