This disease affects not only our "physical" selves - it is also very debilitating to how we view ourselves. The pain, fatigue and frustration leads to isolation. Isolation leads to depression. Depression leads to more symptoms and flares. It is a vicious circle; a merry-go-round without a stopping point.
If you don't have supportive family or friends to surround yourself with, you should find a lupus or chronic pain support group in your area. If there isn't one - start one! A good place to start looking is on the Lupus Foundation of America or www.mollysfund.org websites. It is IMPERATIVE that you find support!
I often find myself slipping into a very dark and scarey place within my mind. I hurt so badly, I feel alone, I am scared. There have been times that I have slipped off into that abyss and nearly lost my faith. Thankfully, I have been strong enough to pull from what little I have, and I say "Satan! You are a liar! God has a plan for my life and I will not bow to YOU!"
This sickness is horrific - but you are NOT ALONE! God has a plan for your life too!
I came across this article on the Molly's Fund website and I thought it would be helpful for those of you that find yourselves going into the abyss...
Coping With Lupus: How Does Lupus Affect Your State of Mind?
Whether you have been recently diagnosed with lupus or have been living with it for many years,learning to cope with a debilitating disease is not an easy task. The ways in which this disease can physically and emotionally affect a person varies widely from patient to patient. One element that is consistent when coping with a chronic illness, like lupus, is the undeniable toll that it takes on the mind and body.
There are many challenging feelings that will be faced and it is important to know that all of them are normal. Power to cope comes from gaining the understanding of where feelings of frustration are stemming from so you are better able to develop techniques for coping. With the right tools, support and education, you can ultimately lead a positive and productive life with lupus.
Some of the Challenges You May Face While Coping with Lupus
- Visible effects of lupus and the ramifications from treatment
- Physical symptoms such as pain and fatigue
- Depression
- Feeling socially isolated
- Difficulty with family and other personal relationships
- Concerns about the future
- Cognitive dysfunction (known as “lupus fog”)
- Moodiness and/or changes in personality
Things You Can Do to Help Yourself
Having the tools to help yourself cope with these issues and others that arise, is vital to your well being. Some suggestions for ways to do this are as listed to the right:
- Get regular exercise
- Quit smoking
- Get enough rest
- Avoid the sun and even indoor fluorescent lighting
- Ward off infections
- Manage pain
- Manage mental well-being
- Surround yourself with supportive people
- See a mental health specialist when and if needed
Things to Note
It is important to allow yourself to accept the feelings and emotions that you may be experiencing and acknowledge that you have good reason to feel this way. But know, too, that even though you may feel powerless, you do still have power. Living and coping with lupus or any other chronic illness can be difficult, but by learning proper techniques and tools for coping, your life with lupus can still be positive and productive.