My view as ALS patient
Someone once asked me if I have any advice for relatives of ALS patients. Of course, I can only talk from my point of view and possibly my opinion doesn’t correspond to that of other ALS sufferers. But I tell you what I replied to that question anyway.
In the beginning, I especially appreciated not having to talk about the disease or my feelings, not having to answer questions when I wasn't in the mood. I needed time to deal with it myself. I appreciated a „quiet acceptance“ and „giving me time“, so that I could talk about it when I felt the moment was right and when I wanted to, not when someone else wanted it. Yes, you can ask a patient about ALS or his well-being, but without emphasis. Be understanding if the affected person doesn’t give you much insight. If the answers are brief, just be sensitive and don’t go into the matter any further. Go and inform yourself about the disease in another way. I always found it valuable when relatives know a few facts about ALS.
It's also important to me not to have any pressure regarding activities or going out. I want to decide for myself when I feel like it and when I do not. Comments that kind of urge you to go somewhere, for one reason or another, are not appropriate. Relatives should understand that an ALS patient probably no longer can or wants to participate in every activity.
If the ALS sufferer refuses to see you (in this situation there are mostly reasons that are NOT personal) do not push, but accept and give time – and don’t make unannounced visits! Because of all the nursing effort that has to be juggled in addition to everyday routine, „spontaneous“ is usually not the greatest option.
The worst thing is probably giving advice on what might help or what one should do: „Have you tried this?“ „Have you been to that doctor?“ Mostly the argument is that it has helped someone else and that „it will certainly help you too“. Such well-intentioned advice often leaves me with the feeling that other people have the impression I don't mind having this disease – because in their eyes I could do something about it if I only wanted to. As if I myself was to blame for my fate... A terrible and poisoning thought!
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If you want to read more stuff like that follow me on Instagram: @bibi_wheelchair_traveller There I strengthen awareness about a life with a disability, life in a wheelchair, a life with paralysis. I address and point out existing barriers, misconceptions, assumptions and associated hurdles in life and society, that many may not be aware of and which in the past I had so often accepted in silence and frustration. I wish to bring more understanding to everyday situations.