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Hello everybody, i enjoy reading most of the posts here. I would like to know, if anyone has experience with a rare chronic medical condition. How do you keep afloat? How do you go on with your daily life? Do you share your issues with friends and family? Is it easier/harder to not share? Hoping some1 can help
KA, every person is different. Some people are very private and do not want anyone knowing their business. It is very difficult for such a private person to share any of their business. They might discuss such an illness with only their mother or one other family member or Rebbetzin, someone they can trust NOT to share it with.
Other people, share their pain and emotions with their friends and family so they can offer support and advice. They also can help with research, with the kids or any other areas that a choler can use help. One very important thing is to reach out to Hashem and to strengthen your emunah and bitachon. It is very hard to go through such difficulties if you lose that. The only real way to get through difficult times is to trust in Hashem and be one with him. The truth is you get the most strength from emunah and bitachon.
Also, here at the CR, we are really good at offering support. So at any time, if you need to vent or you need our support, we will be there for you.
You may want to start with checking if there’s a website for your specific chronic medical condition. Usually, the websites geared for particular issues can offer the best and most helpful support, and you will not feel alone. They also have information about support groups and coping techniques.
I have a child with special needs and I discovered this while trying to help him.
In terms of talking to family and friends, it depends who they are. Trustworthiness is earned not only through maintaining your privacy/ keeping a secret, but by taking the time to show the support that you seek in the way that you need. When I had my first miscarriage and called my best friend for support, she went on to talk about her own concern. I was devastated and grieving to begin with, but then I had to add angry and alone to that burden. You know your family and friends and their capacity to selflessly focus on another. Some people thrive on talking and sharing while others delve too deeply into their emotions and then have a hard time pulling out of them. No matter what, I think you need to seek support. You can begin with sharing here, and
we will try to be there for you as much as we can. You might want to try a therapist, who will listen
unconditionally and without their own agenda in mind. They will be able to help you express your concerns
and to find ways to cope while not allowing it to overcome you.
I think you need a combination of sharing, and not making that your entire life focus. In order to live life you’ve got to be able to see life beyond your condition. Find hobbies, distractions. Give yourself specified times to focus on your health concerns and practice blocking thoughts about it out of your mind outside of
these times. It can quickly envelop you if you allow it to.
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