Strategies
How do you decide what path to take? These are prioritized key strategies for addressing a mysterious chronic illness. Strategies are how you confront the problem at the highest level (what and why). These are distinct from tactics, which you will use to implement your strategy (how and when).
1. Your health is the most important asset you have.
Too many people lose sight of this in their everyday busy lives. Your health is more important even than your loved ones, because who will care for them if your health gives out? Use this as a lens for every decision you make if you are serious about improving your health.
2. No one cares more about you than yourself – so take control of your health.
This is the corollary of the first strategy. Assuming you are of sound mind and don't have a terminal condition, no one will ever have more at stake in your health than you do yourself. So don't expect anyone else can do this for you. You need to own your own health.
3. Don't give up hope.
Some conditions are truly debilitating and/or completely befuddling. Even if you have seen a parade of doctors over decades with no progress, there is still hope. Especially now that you are taking control.
4. Listen to your body (and go SLOW).
Your body is providing the clues, not just in symptoms but in how you react to different situations. Your intuition and feelings are important here too. You will need to adjust to different treatments and trials based on how your body reacts, so it is important to be in tune with yourself. Men tend to need to be much more conscious about this. Always start new things slowly so you can avoid extreme setbacks in case of problems.
5. Accept that you have current limitations.
You have a chronic condition that is impacting your life. You have to accept that you can't do everything you want when you want to do it. Practice self-love and recognize you can only do your best.
6. The better you can understand your root problems the better you can address them.
This is a key concept. The more you can figure out about your particular root causes, the more you can find effective strategies to deal with them. Plus you have the peace of mind knowing that it's not something even worse.
7. Control your environment and mental/emotional load.
Your environment is one of the key things that can impact your health. No matter what you may think, you have control over your physical and mental environment. There is always inertia, low energy, or perceived lack of resources – but if something is important enough you can get it done. The mind and body are one, and if either piece is doing poorly the other can suffer.
8. Prioritize your problems and set specific goals.
You probably have a lot of symptoms and limitations. Prioritize which are the worst and you want to solve first. Set some goals, both realistic and aspirational. Written goals guide your everyday decision making towards these goals.
9. Write it all down.
It is too easy to forget things, especially if you have brain fog. Keep a health diary. Write down updates and questions for doctor appointments.
10. Get the best help you can.
You can't do this yourself, but you can find a team to help you. This could include loved ones, medical providers, and even online tools.
11. Understand that you are on a unique individual journey – you must be flexible, iterate around challenges, and expect setbacks.
Everyone is different, and everyone changes over time. Sometimes you will have a breakthrough, but usually progress is slow since you can't move faster than your body allows. Even when you feel like you are not moving forward you are learning what doesn’t work – and that's still progress.
12. Don't just focus on symptoms, re-examine the fundamentals.
Do not approach a chronic illness as just needing to find the right pill to cure it. It is likely a complex interaction of multiple root causes. Fundamental basics like your diet, lifestyle, exercise, environment, and genetics probably all have to be looked at with a fresh eye.
13. Leverage the unusual to help pinpoint root causes.
There are over 10,000 officially recognized diseases, but only a few hundred symptoms – meaning there is a lot of confusing symptom overlap. By focusing on unusual symptoms or reactions you can sometimes quickly narrow down some possible root causes. Also, remember that you may not realize you have some symptoms because you (or even your family as well) have always had them. I had chronic congestion for decades but did not recognize this because I had never not been congested!
14. Build systems of support.
Have people, tools, and written protocols in place to carry you through difficult moments like a symptom flare. When you're low on energy or clarity, you’ll thank yourself for having a plan ready to follow.
15. Be rigorously scientific.
You are a scientific experiment about how to improve your health. Log what treatments you tried every day, including time, amount, and even brand. Log reactions as well. Log what else changed that day, and how you feel. Only change one thing at a time so you can tell what caused a reaction. This is difficult.
16. Be curious and have an open mind.
If you want to get better you are going to need to investigate and try anything that seems safe. Don't limit your options with blinkered thinking like "supplements are a waste of money," "I couldn't possibly have that," or "it doesn't matter what I eat."
17. Do not blindly trust in anyone or anything (medications, medical providers, etc.).
Many people have a lot of faith in the modern medical system. On the other hand, it has been estimated to be the third leading cause of death in the US and can't seem to cope with mysterious chronic illnesses. Regardless of your views, any intervention can have side effects and you need to research with eyes wide open to make sure that the cost/risk justifies the probability of a benefit. Also recognize that a surgeon is probably going to recommend surgery, while a massage therapist will probably recommend massage – yes, even in one case I know of for the same exact condition!
18. Try low risk/low cost interventions first.
This should be common sense. In the above strategy it would make sense to try the massage first, and only do surgery if that didn't work since massage is so much more affordable and less traumatic.