Medical appointments are a continuous part of living with chronic illness. Yesterday I had to visit the optician about getting new glasses. Usually it is a 30-45 minute visit. First the usual testing of my eyesight, then a scan of the back of my eye and then deciding on a pair of glasses, or in my case two pairs. This is just the appointment. However, i spent nearly three hours at the appointment, due to some delays.
This delay had a massive impact on me. Although I look fit and healthy, able to hold a normal conversation, I live with MS and persistent post trauma headaches. The trip to
The appointment took 1.5 hours, plus the return trip making three hours of driving in a car which is not suited to my MS. Added to this is the concentration of the day. This combination resulted in a significant increase in pain and a severe decline in mobility.
When we arrived home, I very slowly hobbled into the house, sat on the stairlift, and went to bed. It was all I could do. The delay caused my pain to increase by 60%. This has an impact on me today, and probably tomorrow. I know I could be angry for the delay. It would seem rational, and I could be furious with the world. Probably justified. But I didn’t fall down that rabbit hole. My journaling and meditation help with this. I just keep breathing.
This morning I was reflecting on this situation and it’s impact on me. Invisible disabilities are hard to people to understand. Equally, disabilities which worsen due to activity, however gentle, are also difficult to deal with. I know this, and I make compensations for the lack of knowledge of other people. I adapt, not the situation. Is this fair? No. Should I have to suffer, because someone else takes an action which changes my situation? No, I don’t think so.
However, it isn’t easy to change the world, and to alter the actions of individuals is also hard. Perhaps I could have pushed harder to be seen quicker, but by doing this, I would be the cause of increasing my pain. This conflict would worse my headache. I know this. Experience has taught me not to fight, because my disability will not react favourable, plus I could potentially negatively affect my treatment. Too big a risk, I think.
The patient inevitably will have to be the injured party. We have so much to manage, to compensate for, all with the background of fatigue and pain. The physical and mental resources we have for these fights are small. It is easier to accept the pain, than to fight. This is wrong.
There is a long way to go until society actually understands disability and how a small issue, for a healthy person, can have unexpected and unwanted implications for the disabled. To make matters even more difficult I had to use the normal toilet, because someone else was using the disabled one. I don’t know if it was someone who actually needed an accessible WC, but experience makes me think, they probably didn’t need the extra safety devices, I require.
It was frustrating.
Medical appointments are a continuous part of living with chronic illness. Yesterday I had to visit the optician about getting new glasses. Usually it is a 30-45 minute visit. First the usual testing of my eyesight, then a scan of the back of my eye and then deciding on a pair of glasses, or in my case two pairs. This is just the appointment. However, i spent nearly three hours at the appointment, due to some delays.
This delay had a massive impact on me. Although I look fit and healthy, able to hold a normal conversation, I live with MS and persistent post trauma headaches. The trip to
The appointment took 1.5 hours, plus the return trip making three hours of driving in a car which is not suited to my MS. Added to this is the concentration of the day. This combination resulted in a significant increase in pain and a severe decline in mobility.
The Impact
When we arrived home, I very slowly hobbled into the house, sat on the stairlift, and went to bed. It was all I could do. The delay caused my pain to increase by 60%. This has an impact on me today, and probably tomorrow. I know I could be angry for the delay. It would seem rational, and I could be furious with the world. Probably justified. But I didn’t fall down that rabbit hole. My journaling and meditation help with this. I just keep breathing.
This morning I was reflecting on this situation and it’s impact on me. Invisible disabilities are hard to people to understand. Equally, disabilities which worsen due to activity, however gentle, are also difficult to deal with. I know this, and I make compensations for the lack of knowledge of other people. I adapt, not the situation. Is this fair? No. Should I have to suffer, because someone else takes an action which changes my situation? No, I don’t think so.
Can we do anything?
However, it isn’t easy to change the world, and to alter the actions of individuals is also hard. Perhaps I could have pushed harder to be seen quicker, but by doing this, I would be the cause of increasing my pain. This conflict would worse my headache. I know this. Experience has taught me not to fight, because my disability will not react favourable, plus I could potentially negatively affect my treatment. Too big a risk, I think.
The patient inevitably will have to be the injured party. We have so much to manage, to compensate for, all with the background of fatigue and pain. The physical and mental resources we have for these fights are small. It is easier to accept the pain, than to fight. This is wrong.
There is a long way to go until society actually understands disability and how a small issue, for a healthy person, can have unexpected and unwanted implications for the disabled. To make matters even more difficult I had to use the normal toilet, because someone else was using the disabled one. I don’t know if it was someone who actually needed an accessible WC, but experience makes me think, they probably didn’t need the extra safety devices, I require.
It is really difficult to manage both my own situation and to need to adapt to the world. It is like getting slapped on both side of my face, at the same time.
