They Keep Forgetting
Last updated: April 2023
You could be excited to spend time with your friends, but the first thing you see upon arrival is a tall staircase in front of you. Or you could be reminding a family member that you are fatigued, not simply lying about.
Most of us have had the experience of someone who keeps forgetting that you are a person living with multiple sclerosis (PLwMS). Whether it is planning an event or speaking carelessly, these people can cause us genuine pain and annoyance with their inability to remember our disability. Why on earth can they not remember that we live with a chronic illness?
MS is every day
For a PLwMS, dealing with multiple sclerosis is an all-day, every-day event. As someone once told me, "You live your life. MS is just along for the ride." From my twice-daily meds to various symptoms, multiple sclerosis is never far from my mind. It affects nearly every thing I do, but that does necessarily mean that it interferes with my daily routine. I think of my MS several times a day. It just is what it is, and I have to take it into account regularly.
This is especially true when it comes to planning activities for myself. I make sure that there are plenty of places to sit or that they can accommodate a rolling walker. Are the seats wide enough or armless? How long is the event and at what time? I make sure that I can be as comfortable as possible. I make these same considerations for others. Most of my friends are the same way.
When people forget your limitations
When someone says that they forget I have multiple sclerosis, they believe that it is a compliment. It means that they do not see me as "different." They see me as having the same bodily experience that they do. They do not seem to fully grasp that I cannot do just anything at any time at any place. That I have to plan, plan, plan. It seems that each and every time they have to be reminded that I am a PLwMS who lives with limitations. I already know that I am. I do not need to be reminded.
Invariably, there are events that are not MS-friendly. Most events for me are not friendly to my disability. So it is just that much more irritating when someone close to me forgets to take my needs into account. It would seem to be a matter of common courtesy to make sure that people you like or love can participate in whatever is going on. It can feel like a deliberate act of hostility.
Working around them
I have been living with multiple sclerosis long enough to know that I have to take control of things if I want them to change. Dealing with those who do not make allowances for my needs is one of those things. It means extra work on my part. I have to ask more and detailed questions when one of my "forgetfuls" invites me out. I need to treat it as if I am making the plans myself. If it is an unfamiliar venue or restaurant, I scour the internet for photographs. I look for handicapped or close parking. If there are interior photos, I look to see if the seating is close together.
This all assumes that the forgetfulness is due to genuine oversight. If there is malice or passive aggressiveness behind the forgetting, then all bets are off. Simply decline being treated as dismissively. Living with MS presents challenges on a constant basis. Do not let that "I forgot you have MS" person be one of them.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: