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Are you covering up your ALS symptoms in social situations?
When in social situations do you sometimes make excuses or say your ALS symptoms aren’t so bad, just to avoid bringing down everyone’s moment of joy?
Or, do you pretend to be healthier than you are because it’s exhausting to have to keep explaining to everyone what ALS is, and how it affects you?
Is this strategy working for you or if you’ve changed your attitude, why?
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8 Replies
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When in public, I don’t like drawing attention due to my symptoms (movements, speech, etc.). I’d rather have people notice that I’m wearing something unique…like a hand-knit scarf… or, blend in all together. I don’t think anyone wants to be noticed for their symptoms.
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I live in a complex which provides a daily lunch. The other residents know my diagnosis but I’m struggling to eat independently. This makes me feel embarrassed, although no one has passed comment. When eating out, I usually try to make light and say that my hands don’t work properly if it comes to the attention of other people but I try to position myself so that other people can’t see me eating.
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Babs, kudos for your ability to keep engaged with others and feel OK about your
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Yes. I have lower leg weakness in both legs. I am wearing a walk on AFO on the left leg for foot drop and an ankle AFO on the right side as my right leg is now getting weaker. I have a brace on my right knee because I have a bad right knee that can not be operated on because of ALS. I am still using a European Style Rollator at all times to prevent falls. I am continually asked about getting knee surgery. Only then do I explain I have ALS. Most do not understand at which time I explain Lou Gehrigh disease and still most do not appear to understand. I do not bring up unless asked.
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Mort, I have the same challenge when trying to explain my ALS. Most folks still are not aware of it or its effects.
I wonder what other members do and how they explain their condition in simple and easy-to-understand terms.
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I attend weekly breakfast meetings of a civic group, monthly dinner meetings of book club, weekly lunch with a family member and occasional get-togethers with friends. Currently speech is very obviously affected, use adaptive silverware and am very selective in what I eat (easily choke/cough) and eat far less than pre-ALS. With these groups, given my long association with them, they have been very gracious and kind-reiterate my order to the wait staff, open the coffee creamer, offer to cut up my food, etc. I’m very blessed.
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I’m in a wheelchair all the time so I can’t really hide much. I get very uncomfortable when people ask what happened and I have to explain. I say as little as possible and try to make seem that it not as bad as it is
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I have been living with a LS for 2 1/2 years. My dominant hand is unable to work at all, my left hand is getting weaker. This to say, eating out and eating in front of others can be a challenge. In addition, I use a cane / crutch to walk. I wear a name badge that says Deb Winters, living with ALS. While I don’t enjoy the deficits I’m learning to live with, they are not of my choosing or design. I don’t exaggerate them in any way ever! For instance, I don’t order soup in public. However, I proudly and gladly answer questions of other adults, and particularly of children who I catch looking. I know their adults are listening as well. Education and awareness of ALS and the challenges it provides is critically important in our culture. Take a moment – answer questions – point people to a resource. Let them know how they can help and make a difference.
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