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Processing your ALS Diagnoses
Hearing a diagnoses of ALS is life changing to say the least. Many of us are unaware of what ALS is when it is mentioned by a healthcare provider. You may experience a wide range of emotions from fear, denial, anger, rage, peace, acceptance….the list is endless. Regardless of what you feel initially, you will likely feel everything at some point. You may not be able to process all of these emotions in a healthy manner by yourself and it may be to much to share only with family and friends. Counseling can help us process information and move through various stages with peace. A professional counselor will be able to help you prepare for changes and help you prepare others for these changes.
Have you talked to a mental health professional about your ALS diagnoses? What has that been like for you? How did you find a counselor that specializes in terminal diagnoses?
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8 Replies
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I have been seeing a therapist every week for 8 years. My therapist hasn’t seen anyone else with ALS and didn’t know anything about ALS. She told me that everything she knows about ALS, she learned from me. Although my therapist doesn’t have any experience with ALS patients, we get along very well and I feel comfortable with her. I did ask my contact person at the ALS Association if she felt I needed to see a therapist that specialized in ALS. She said that finding a therapist who specializes in ALS or who is even familiar with ALS is difficult. She said that the most important thing is finding a therapist you feel comfortable with and a therapist you feel you can be open and honest with. I have found that with my therapist and she has been supportive both before and after my ALS diagnosis. I hope that all of the forum members have a therapist they can talk to because this is very important.
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You are absolutely correct, it would be difficult to find a counselor that is knowledgeable about ALS. However, there are licensed counselors that are knowledgeable about working with clients diagnosed with a terminal illness. https://www.goodtherapy.org/learn-about-therapy/issues/terminal-illness discusses it on their webpage.
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Thanks Amanda. Would you recommend ALS patients see one of those counselors in addition to the one they are already seeing ( if they already see one)?
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Therapy to help process my diagnosis – – That’s the one thing I wished had been an automatic recommendation via the ALS clinic when I was first diagnosed. But that was 10 years ago, and even today, I don’t think it’s brought up – – unless the patient asks first. There is still somewhat a stigma about it. Actually, I believe that a therapist should be a member of the ALS clinic team; just like PT/OT, dietary, etc.
As to having a therapist familiar with ALS? I don’t believe it’s necessary – – just find a good cognitive behaviorist who works with people who have chronic and/or terminal illnesses. Although our symptoms vary widely, our basic emotional human needs are the same – – and that goes for any chronic and/or terminal illness. Personally, I find it much more helpful to learn positive coping strategies than focusing on dying. But that’s just me. But any counselor can help with acceptance, coping, and how to manage negative thinking.
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Dagmar, I agree with you that there should be a therapist on the ALS clinic team. Great advice, as always. Thank you so much.
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What are your thoughts about the link that Amanda provided about terminal illness?
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I thought it was very upsetting to read it but I guess that’s the reality of what we are facing. Before being diagnosed you are just living life every day and not even thinking about death. Then suddenly you are forced to confront it and it is so overwhelming and depressing. Your life becomes very different and it’s hard to cope with and adjust to this new life. One of my doctors described ALS as “having really bad luck”. It’s hard to not know how much time you have left. Even if you are not necessarily positive about it, you can still be inspirational because it would be easy to just no longer live at all but if you keep fighting then that is inspiring.
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When I first had symptoms my doctor said ” Well you haven’t fallen so so it’s probably not MS or ALS”. So the next week I unexpectedly fell in the yard. I searched the internet for every possible disease or condition and ALS always fit the symptoms. When I was finally able to see a neurologist and they tested my legs and I was twitching all over the place the doctor was cagey “Well you have some of the symptoms but not all”. The second neurologist confirmed it was ALS. By that time I had prepared myself mentally. Being a crier the last thing I wanted to do was burst into tears in a doctor’s office. The internet helped me prepare for the worst. And I was able to say “this sucks but I finally have something in common with Stephen Hawking”.
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