Working through guilt is a great topic to discuss I believe for a chronic illness sufferer. I have always wanted to make others happy . . . I don’t like to use the term “people pleaser”, but I mean your family and friends you want to make them feel special, important and top priority with you. I also like to be a person that keeps her word at all times. If I tell you, I am going to do something I want to do it/follow through no matter what. Well, dealing with an autoimmune disease and chronic pain will put a damper on this area of your life unfortunately too. So, this is something I am learning to do is try my best not to feel guilty. I don’t want to think I have disappointed or let someone down, but to have those feelings of guilt can take a toll on you and seriously could in itself trigger a Lupus flare-up.
My advice to a sufferer would be this:
Do the best you can do each and every day, pencil in activities and events and do your best to follow through/attend and worst case if you have to cancel then so be it. Always remember you have to take care of YOU before you can take care of anything or anyone else. The hardest part for me has been putting me and my health needs above other things . . . . . At first, it will feel selfish to a person that never does this, but then you will quickly realize that it is essential to your health and to maintain somewhat control over this disease.
My advice to a family member or friend of a sufferer:
Please educate yourself on the disease that they have whatever it might be, don’t judge, have patience and understanding. To be made to feel guilty about canceling or taking a break is not the right approach, trust me NO ONE is EVER more upset/disappointed with the situation than the sufferer, so my advice would be - do not add to that guilt they are already battling daily within.
God Bless You All and Thanks For Taking The Time To Read,
Okay, so the picture is a little harsh that I posted with this Blog post (at the bottom of the page), but I think it gets the important point across. Haha! :-)
What is the old saying, “Don’t judge a book by its cover”? Well, it is true with most autoimmune diseases too, they are often called invisible diseases. Therefore, the average person maybe tends to discredit the debilitating and painful issues that we can go through. I think our minds conceive an “issue” if you can see it – for instance, a wheelchair, a cast, a cane something that is visible and obvious. When in fact, some of the most horrendous days I have had no one would even from the outside looking at me possibly know it. I have even had people state to me “Oh you look great, so you are all better?” I just smile and say “I am having a decent day” – but they don’t know it might have taken me 4 hours to get ready because I could barely stand up in the shower or I have to take breaks in between drying my hair or putting on my makeup. I know there are very visible signs that can occur (shingles, migraines with eye swelling, inflammation, arthritis, hair loss, weight loss/weight gain, etc.) but the invisible ones are just as horrific. You can’t see with Lupus SLE that there can be organ involvement (brain, heart, lungs, kidneys, liver, etc.) going on that can be life threatening at times during a flare-up and these certain areas are being attacked.
I guess the main thing I wanted to touch briefly on is: Don’t ever underestimate because you can’t SEE something wrong, that things are fine with someone. Get to know them, get to know autoimmune diseases and educate yourself. I am sure there is someone that you know of personally that struggles with things that no one sees, but trust me it is very REAL in their daily life. Most sufferers are not looking for your pity; just a little understanding would be awesome :-)
Thanks for reading,
I know it is hard to believe when we are at our lowest that we could be utilized to help others.
The above statement is soooooooooo true, right? I am not going to deny that this disease can make you feel like your life is over, there is no meaning to it and can even make you doubt your purpose/existence at times. I mean seriously how could I help someone else out when on a bad flare day I can’t even take care of myself. Trust me; you are not alone in this thinking. I would encourage you to look past the negativity which I know can be a lot, but fight every day to see something positive. No matter how small and then you will quickly start to realize there is, in fact, more positive left in your life than what you realize.
Once I finally picked up the nerve and chose to make my disease so public it has been very positive and empowering for me. To be such a private person when it comes to my health, this was a challenge, in the beginning, to talk about it. I think we all have to deal with the diagnosis (let it “marinate”/soak in as I would say), decide for ourselves and then it is our story to tell when we are ready. I think the common concern I hear repeatedly echoed is “what will people think?” or “what if I’m treated differently?” Well, Sorry for the bluntness, but a little honesty newsflash – who cares what people think and yes they probably will. The ones in your life that love you want to understand your medical condition and want to be there for you will be the ones that “get it.”
I sadly, hear from others that don’t have that at home family support and honestly that is an area that I can’t blog about because I have had nothing but amazing support and understanding from my husband and three children. My prayers go out to anyone that does not have a support system. You don't need a big one, you just need one :-)
Thanks for reading my 1st post - I can't wait to blog more things in the near future. Please reach out to me should you need to vent, scream, cry, have questions or a prayer request. I want to be there for anyone that needs to know someone cares . . . . . I CARE!
* A very honest and real perspective on life from