I belong to quite a few Autoimmune and Chronically Ill groups and there is quite a lot of discussion and debate about how much of our life and challenges we should share with the world.
It can generate a lot of different opinions and almost everyone has their own view and perspectives.
There are many people who claim to have lost friends and family members by revealing too much about their life or their health challenges. This is very sad and my heart breaks for the pain they are going through. I have been there too.
Some people are in the “I might have (insert disease), but (Insert disease) doesn’t have me!” So they don’t talk about it or refer to their illness in public or how it affects their life. They consider it a mark of their strength and determination that they keep their illness hidden and can blend in with the general public. They prefer to keep their illness private and tend to turn to private and closed groups to talk about challenges, pain, frustration, fears and realities in secret. Their choice. I would think it requires a lot of juggling being several different people and working hard to make sure they never collide. Some of us don’t have the luxury of choice.
There are also many people who have been told “You talk so much about your illness… if you didn’t talk about it so much you might get better!” or “It’s all in your head! If you were more positive you wouldn’t be in such pain!” and “You bore us with all your talk about being sick. Why can’t you be more fun? People would like you more if you didn’t talk about how sick you are!”
I still find these comments incomprehensible. Thankfully no one has said or written such a thing to me. It would take me moments to respond with my thoughts about such ridiculous comments and those would probably also be my parting comments.
The difficulty, I imagine, for many people (Autoimmunes and healthy people alike) is that there is no ‘one size fits all’ and no two people will have exactly the same experiences and outcomes. Therefore two people may have the same diagnosis and yet one person may be severely affected, while the other one may be ‘high functioning’ and basically symptom free for much of their time. One person may be able to work, go shopping, go holidaying, all without too much difficulty. The other may need help to shower, eat, dress etc. They have the SAME illness but very different realities.
Autoimmune illnesses are slippery devils, that’s what makes them so difficult to diagnose and so difficult to treat.
To use a metaphor for car lovers. Some cars are Ferrari’s and some are Volks wagon beetles! They are both cars but they are worlds apart. You cant compare the two. But they are both still cars. As much as you might wish your VW was a Ferrari you can’t pretend it into reality. Its not a question of positivity or attitude. Its a statement of fact.
Everyone is free to choose how they deal with their disease and illness. I respect their choices, here is mine…
I am in a wheelchair. I need assistance to do many of the basic things in life. I can no longer drive. I live with quite a lot of daily pain and various complications and I am not in a position where I can ‘hide’ who I am and what is happening to me. And I don’t want to. Why should I? If my reality makes others uncomfortable then I am happy bid them a fond farewell. I have never asked my gay friends to be less gay or hide it. I don’t require my geeky friends to be less geeky or not talk about it. I don’t ask my friends who have children to stop talking about their kids or tell them how boring they are, or when they complain about motherhood I don’t respond by saying that its all in their heads. I have respect. I have empathy.
As for letting an illness define me, I find this nonsense. I MUST share my body, my life, my choices and my opportunities with how I am feeling on any given day, all the positive thinking in the world wont change that, so I have accepted that this is who I am now. It took years finding my new identity and I wont let someone tear that hard work down. I choose not to live in denial and I must accept the hand that is dealt.
I refuse to edit my life so that it appears more fun, entertaining, exciting, glamorous, or more ‘normal’. I think I am normal! I am what a normal person would feel like if they were in my circumstances. I find the whole concept of normal as completely meaningless and entirely subjective.
I think people also confuse illness and pain for a lack of confidence or identity, as a weakness or a lack of passion, a lack of humour and a lack of creativity! I call BS to that! I am still the most positive, loving, caring, funny, creative, artistic, intelligent and I am not insecure about these things. I don’t need to hide my illness and edit my life to prove that.
Once you start talking about things other people want and conforming with what everyone else wants then you really do give up what makes you who you are and what makes you an individual. Anyone that doesn’t like what I write or say can go on their merry way… with my blessing! I have lived with my own company for long enough that I am quite at peace with who I am.
Since choosing to become an advocate, it means I do tend to share more about my day to day life for a purpose, that being education and awareness. I chose to be an advocate and so I am putting myself out there in the hope that others will find dignity and validation. That has been the choice that I have made for my life and I will stand by it to my last breath, or until I decide I no longer need to blog anymore.
As an advocate I must be thick skinned, confident, intelligent, courageous and realistic. Not everyone is going to like or support me but that is their choice and I respect their decisions. I don’t always support their decisions in life either. That’s life!
I admit that when I read how people have been scorned or shunned for sharing details of their life, their illness and their challenges there is a lot of me that wants to say to them “It’s your life… Say what YOU want. Don’t ‘people please’ as they are not the people that will be by your side when you are in need!” However, I also believe it’s everyone own choice how much value they place in other peoples opinions and how much they value their own voice.
As I get older, whether I am sick or not, I have become very particular who I let into my life and whose opinions mean anything to me. If I am completely honest there are probably less than a handful of people whose opinions who mean something to me; but at the top of the list is MY opinion. In the end I am the one who has to live my life so I am going to say what I really think and believe. I believe life is not a popularity contest. It took me a long time to find my voice and my self awareness so that I can be resilient to the setbacks and hardships that come along.
And finally. What I write on MY page or in MY blog is my choice. If you don’t like it then there’s the door!