Disease vs Disability 


I can’t tell you how many times I have encountered mixed reactions from the Autoimmune community about the following topic that I have almost given up discussing it at all!

No matter how ‘diplomatically’ or ‘realistically’ I try and approach this area it can be like walking through land mines; only more dangerous!

Over the past 10 years I have ‘met’ thousands of AI fighters and ALL are unique in their circumstances and disease activity and, yes, abilities.

Diagnosis with any disease does not imply that the person is, or will be, disabled AND the converse is true. Those with disabilities don’t have to have a disease which has made them disabled. It is wrong AND dangerous to assume ANYTHING when it comes to Autoimmune Diseases however. There is no one size fits all. That is also what makes Autoimmine diseases SO frustrating!!

Autoimmune Diseases still remain complex and VERY unpredictable diseases, and there is no knowing how and if they will progress.

Years ago I began using the term ‘high functioning’ to sufferers to describe those who may still have mobility, experience remissions, act independently, require minimal supervision or can interact with the world relatively successfully and autonomously. I was shocked by the backlash!

I thought I was being very respectful at the time but it envoked so many reactions, all seemingly insulted that I was trying to diminish their pain or struggle in some imagined way.

Nothing could be further from the truth!!!!

I try very hard, and deliberately, not to perpetuate the act of comparisons and competitiveness that can infiltrate discussions of autoimmune diseases. The ‘… I am worse off than you…’ Game has NO place in a supportive and united  community.

I work hard to stop it and don’t even disclose many of my own diagnosis And struggles for this reason. I don’t want people to see me as a list of dx or symptoms but rather as an Allie and advocate to ALL; No matter who or where you are.

Today when a discussion arose and I suggested that some life choices where not as available to those who were ‘less high functioning’ I was I berated and it was suggested that I was being insulting. I shake my head sometimes. I really do.

I was reminded that there is a group of  fighters that live by the motto ‘I might have (insert disease name) but it doesn’t have me…’

I am very happy for those who feel that this mantra affords them the feelings and attitude that they find useful, and to those people I say “power to you”! Whatever works!

I have no problem at all with a nice slogan and a good attitude. It can be very useful when we need a little lift. However I personally don’t find it helpful or beneficial to try and deny the effect that diseases have taken on my life and no amount of positive thinking has changed the day to day challenges I face. Trust me.. I tried!

If you ARE in a position where you physically can push through with the aid of strong mental attitude, then it clearly doesn’t have you. If you can walk, even with pain, but you can still walk then you will see life differently to someone who no longer has that ability at all no matter how many happy thoughts they try. Nerves and muscles require biological assistance and don’t necessarily respond to mantras.

If you can still eat, then that is another plus. It’s all a question of degrees which makes me very mindful that we are ALL different and ALL unique. ALL of us.

I feel for those fighters that believe that they are not coping or doing their best simply because they are not doing as much as someone else with the same diagnosis. They feel failures or mentally and emotionally weaker because they are not as ‘high functioning’. It breaks my heart when I read the painful and agonizing posts from fighters who feel the comparisons thrown at them by the community at large. I include myself in this group too because I felt like a failure when I wasn’t physically capable of doing what many others were capable of; I interpreted this as my own shortcoming or lack or positive attitude!!

This also astounded me because I have always been known for my dedication, commitment and tenacity… So why couldn’t I just slap on a smile and dance again?! Why couldn’t  I just giggle myself well enough to walk and do what others seemingly could?!

Maybe… It isn’t a matter of trying to be like others, but being the most enduring version of myself!

This realization was freeing and validating and that’s the message I try to suggest to others to consider today.

If you are in a flare or not as able bodied (due to disease progression and symptoms) as someone else, it makes more sense to be happy for them and compassionate to yourself.

If you have different circumstances and challenges, that has to be factored in as well.

When I tell someone they are high functioning I am not belittling them or provoking them, I am simply acknowledging they have different abilities and choices than me. I also accept that there are those who are in need of more physical support than i am too. It’s not a race.

My choices are very much based in my current abilities and possible future needs. This is not pessimistic but simply important considerations and good planning.

Am I still positive! Yep! Am I still grateful? You bet! Am I still able to be happy and at peace? Absolutely!

Even more so since I stopped comparing myself in negative ways and believing that just because someone has a similar diagnosis as me that we share the same abilities and opportunities. We don’t.

I believe that we can still validate each other, believe in each other, celebrate each other and support each other. No matter where we are in our battle. AND I think that shows some of the best positive attitude of all.

Gentle hugs,

Trish.

2 thoughts on “Disease vs Disability 

  1. Trish, Thank you for yet another insightful post that resonates with me on so many levels.
    I think sometimes we hope that those with disease or disability automatically gain compassion, insight & understanding of others but unfortunately I have found in my work with support groups, if someone has a self centred nature or their own agendas (political or otherwise) their symptoms, their mantra is their reality & they just don’t get the depth of the message you are advocating. I have tried to explain the same thing & have been left feeling like I shouldn’t encourage the walking wounded & those struggling. I shouldn’t allow a real depth of discussion & worse I shouldn’t advocate friendship in the support group environment. It saddens me more than words can express. Your post encourages me to know there is someone else advocating for others who has a similar viewpoint.
    Sam x

    Like

    1. Thank you for your feedback and although I never expect or require people to share my views, I really am relieved when I hear others hope that we can be a supportive and United community no matter what our individual levels or circumstances are. 😘😘

      Liked by 1 person

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