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Don't have a chronic condition (as far as I know) but have a child with a minor autoimmune issue. Having someone you care about affected provides a somewhat int
by KKPMW 6y ago
Don't have a chronic condition (as far as I know) but have a child with a minor autoimmune issue. Having someone you care about affected provides a somewhat interesting "sideline" perspective on the best course of action. Here is what I did:
1. Try to learn what the world knows. I've read 2 books and close to 100 scientific papers ranging from 1980 up to 2020 about the condition. This helps placing the incident as a point along the timeline. You will see how people in the past coped with it, what are the most promising treatments today, and what is coming up around the corner. Also a lot of insights into what might have caused it and what changes can be made to slow it down. Also you will most likely see that the future is bright. The medicine is full of hot upcoming things. Training t-cells to fight cancer, selectively suppressing certain pathways to turn-off auto-immune responses, healing gut bacteria to get rid of sub-clinical infections, etc.
2. Find the best doctor who takes a personal interest in your case. You should be able to go to your doctor and discuss any new development, any changes you noticed, and get a reasonable advice back. The doctor will compare your case with other persons he/she is treating and will be able to give you a lot of advice, even some anecdotal wisdom.
3. In addition to your local doctor, try identifying the leading figures that are investigating the disease across the globe. They typically attend conferences which you can find online, or write blogs on some website, or other things like that. They will also respond to emails, especially after seeing that you did your homework and know about their work.
4. If the disease is manageable - do what you can to stay healthy. Eat healthier, sleep healthier, avoid stress and excess pollution. Most diseases have some individual-specific corners to them. In this case experiment until you find what works for you.
5. For personal peace of mind, think about the big picture. Do not compare yourself with others. Rather think about what you are able to achieve for this world compared with the case of not being born at all. You will find that it is substantially better, for the world and humanity, for you to be born with the condition, than to loose you. Concentrate on that and do your part, do what you want, do what you can.
In the end I think that onset of some illness might be a hidden blessing. Someone might be healthy all life, seek pleasures too much, and waste a lot of it on hedonism. A durable yet uncomfortable disease can provide direction and a boost in motivation. And if the disease can be managed by a healthy lifestyle, chances are, you will turn out to be healthier than the average person on the street.
- phobosanomaly 6y agoI love #1. People who go beyond WebMD, and keep digging to the point where they can have a conversation with a specialist, more as a peer than as a patient, are a big deal. It's not easy, and I think it's unreasonable to expect that everyone can do this (dig through and understand the primary literature), but if you can it's a big deal. There are so many nuances and complexities and tradeoffs in managing chronic diseases that if you can sit down and make informed decisions yourself and then talk them over with a healthcare provider in a non-adversarial way, it really does put you in the driver's seat as much as possible. It opens up #2 and #3 as well.