Invisible Disability

Apologies, I have had to take my eye off the M.E. ball for the past 6 days.  I have been doing the bare minimum for Foggy and I feel bad for it. As you may or may not be aware, my dad has been exceptionally ill since Monday and his diagnosis required ambulances, A & E and a hospital stay. He is now medicating at home and is on the mend so hopefully, I can get back to normal now! My mum doesn’t drive so I have been the taxi driver taking him to and from various hospitals for tests, appointments and overnight stays. That, when added to the stress of having an ill loved one, has wiped me out! Since 11 am yesterday, I have slept for 15 hours…..that is a record for me! Do I feel refreshed? As if!

Anyway, I thought I would write about an experience I had in A & E on Wednesday evening. I drove up to the hospital at 9.30 pm and we were whisked straight into A & E (we had been called and asked to go up ASAP due to blood results). Whilst my dad was being taken care of my mum and I were shown the seating area. Each patient is allocated 2 seats. One for the patient and one for a visitor. I am 100% appreciative that priority should be given to patients and so seating for visitors is not a top priority. That is not what this blog is about. This blog is about M.E being an invisible disability.

In between tests, and being prodded and poked, my Dad came and sat with us in the seating area. Now, I’ve already said that there were only 2 seats.  My mum uses a walking stick. She doesn’t have a disability but she does have joint pain and uses the stick for balance. I don’t have a walking stick.

I was stood for around 20 minutes. I couldn’t pull over a chair as beds were being wheeled past that area and space was limited. I was dying on the inside! My head felt like it was going to hit the floor at some point and my spine felt floppy. My mum offered to give up her seat (cue funny looks from the people in the bay next to us). Within 1 minute….yes…1 minute, the people next to us moved along to free up a seat for my mum…who is NOT disabled. I could feel the disapproval from the seat-movers coming in my direction. Could I be bothered to explain that I have M.E, that it is a real condition and that it is a disability? No.

Let me clarify – My mum is in her late 60s and I wanted her to be sat down but in that situation, who would benefit the most from the seat? I would have to drive us home and so needed to preserve energy. As we moved to other areas, more standing was required as there was no seating available. AGAIN, I understand that in an area where crash teams are usually present, seating for visitors is not a priority! I ended up leaning on a sink to try and stay upright! My words became more and more slurred and we had to leave early (12.30 am) to make sure I was safe to drive. My Dad was happy in the knowledge that he was being taken up to a ward for an overnight stay so I didn’t feel TOO bad for leaving him!

This is the second seat incident in about a month. The other was during our trip to Winchester. My dad had driven us from Portsmouth to Winchester as he understood that I needed as much energy as possible for my important Foggy-related meeting. We got on the Park and Ride bus to go into the city centre.  My Mum could sit in the ‘limited mobility’ seating but I couldn’t. Foggy was not impressed – he wondered why his disabled P.A was not eligible for special seating even though moving around is difficult due to energy and not pain.

I am actually considering taking some kind of prop on similar occasions. Purely because I don’t want to experience the stigma surrounding invisible disabilities. I don’t think walking sticks or other mobility aides are a badge of honour or anything but at least they are a visible indicator of impairment.

Sally (and Foggy obviously)

p.s Foggy is currently in Orlando on the hunt for Goofy!
p.p.s…Excluding this latest trip – his mileage stands at 9010 miles!

1 thought on “Invisible Disability”

  1. Oh sweetie, I'm so sorry you had to go through all this. Of course, thank God your dad is home and on the mend. Of course you had to take time away from Foggy! As for how you were treated, while appalling, it is all too common. I remember being so sick at one point that I had to use a walker. I got on to the subway/metro/(insert proper term here) and there were two girls sitting down – one in the reserved seat for people with disabilities. There I am, with my walker, getting bizarre and dirty looks from many passengers (after all I LOOK healthy, therefore I must be ��) I'm fully expecting the girl in the reserved seat to get up. Nope. When I finally asked her for the seat I was greeted with a scathing and disgusted look. Yes, she finally gave me her seat but she was NOT happy about it. Now never mind that there were LOTS of people sitting down (doing their utmost best to ignore me) who could have gotten up. I think this issue goes much deeper than manners; I think it's a cultural issue that only seems to be getting worse. So you could show up carrying a giant ME banner with a brass band ushering you in and I don't know if you would have been treated any better. That's why we need to grow a tough outer shell so that we can ask for what we desperately need and to hell with what looks we get or what people are thinking of us! Can you imagine what would happened if you had collapsed?? You could have been seriously injured!! If we are going to have any hope of living well with our illnesses, we need to take responsibility for our needs. I'm by no means saying this is easy. I'm at this for 7 years now and I still feel uncomfortable asking for what I need – knowing full well that I could be on the receiving end of some pretty nasty treat (you should see the looks I get when I have the audacity to use the handicapped parking – which I reserve for my worst days. But I refuse to suffer needlessly due to the ignorance of others. I don't know if that makes you feel any better or worse. I just wanted you to know that you have a sympathetic ear on this side of the world – and probably every person dealing with an invisible Illnesses; which I know is part of the reason you created Foggy. Bless your heart for doing so! You are making a difference Sally.
    Hugs from Kristina in BC ❤️

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