How often have we all heard, “But you don’t look sick…” or “You’re a hypochondriac…its’ all in your head…” It is usually due to a lack of understanding that others are not supportive. Do your best to teach them about the disease and help them understand, but don’t expect them to. Unless they are in your shoes, they won’t fully understand.
I was incredibly fortunate to have a husband who supported me. It wasn’t easy, and at times he got very frustrated with me. But he never stopped pushing me to fight. Sadly, many Lyme patients don’t get much support from their family and loved ones. Put that together with the financial, physical, emotional, and mental stress of dealing with this disease, and it often leads to depression and thoughts of suicide.
If your loved ones just don’t support you, find support where you can. Having a support network is crucial when struggling with Lyme disease. It is incredibly important to feel that someone understands what you are going through and is there if you need to talk. You need to feel as though you are supported in your fight. And it is a fight….a fight for life.
It starts with supporting yourself. It is so easy to get frustrated with your body and all of the symptoms and issues you have. At a certain point, you may get sick of being sick and start to become angry with yourself and your body. This is a downward spiral.
No matter what, be gentle with yourself, supportive, and keep reminding yourself that you DO have it in you to beat this. You CAN get through it. Some days it may be hard to believe, but keep believing it. Don’t allow yourself to become overwhelmed with the monstrous big picture that hangs over you. Focus on each little success. One moment at a time, one step at a time, one day at a time.
You will have good days and bad days, but keep moving towards the good ones. Do NOT give in to the disease. One thing I told myself often: “I refuse to let a bunch of stupid little spirochetes take over my life and my body. It’s MY body! And they can’t have it!” Find your voice and your strength. Find your own mantra to start every day with. And do your best, every day….to get out of bed. It may be the hardest thing you do each day, but try.
Personally, I did not give myself any other option than to beat this. I can’t tell you how many days I wanted to stay in bed. How many days I didn’t think I was going to make it. I can’t tell you how many days I wished I could get a full body transplant…and struggled to understand why I just couldn’t catch a break in this life.
So, instead of giving in, I made myself get out of bed and go to work every day. Sometimes I had to go to the bathroom and take a minute because the pain was so bad, but I went. And I had to go to bed early, and sleep a lot on the weekends because of the fatigue, but I made myself get out of bed every single day. I had to limit my extracurricular activities, because I just didn’t have it in me. But, I got out of bed.
Do whatever it takes to support yourself and your body through this process. Do whatever it takes to surround yourself with those that support you. And understand that your loved ones need help understanding and may need support themselves. It is not easy to watch someone you love suffer as much as many Lyme patients do.