Hi everyone. My husband has had Lyme since, we now think, 2009. We are definitely struggling. He is struggling. We have a 1 year old child, and things have become progressively worse in the past year and a half. He feels so isolated and alone, and I am at a loss as to how to help him. He is in so much pain each day, and he is in a very hopeless place. Does anyone have any advice on what has been helpful from their partners, or from spouses who have been in a similar place? Thank you for any advice!
Hello, and welcome to the community. I am one of the mods here, our communities are supported by an all volunteer staff. We try to help out where we can and While I don't have Lyme disease, I DO have chronic illness that is debilitating more times than not. I understand pain, and being sick all the time. It sucks. Sorry, but there is no gentler word to describe it.
There are stages that we go through with chronic illness. You can compaaare them to the Kubler Ross stages of grie; it's a huge loss. I went through a crisis of identity. Before, I was a wild outdoor woman, single mom (for many years), fiercely independent, a critical care nurse (a rockstar)...all of these things that were "ME". After I had my first flare of psoriatic arthritis (PsA) I found that simple tasks became more difficult to the point that bathing and dressing became an accomplishment. Even with (mostly) successful treatment, there were still things tthat I used to identify with that were very difficult to manage (like camping, working at the bedside, maintaining an immaculate home, etc.). It was a really hard time and I suffered a severe case of the woe-is-me's, the who am I's, and the i deserve better's. Not a good place to be, let me tell you. I was very angry and bittter. I joined the Ben's Friend's group for PsA, and it has had a profound impact on my life. I learned a lot, and I learned that I needed to change my thinking. a friend kindly told me to get my head out of my hind end, and I got counseling to learn how to live with chronic illness. I am incredibly lucky to have a phenomenal primary care provider who has helped me find good specialists for rheumatology and pain management.
It takes time, and there will always be tough parts that will be a struggle. However, over time, we learn to live with our illness, and figure out who we are again, and adapt to the new normal that our disease has given us.