Lupus is a pretty devastating disease, and those who do not have to deal with it firsthand, day after day, don’t really get to see that. Often, those who know someone battling it tell me about how that person is living a normal life, or how they have it managed.
There are some who are blessed to be in remission. But for those of us who have yet to partake in that blessing, normal is far from what we are experiencing. We are battling some pretty unpredictable days and nights. One thing that is consistent is the inconsistency of what your next day or even your next hour could hold.
Support from friends and family is something that many have learned, or they’ll learn the hard way what they’re so missing.
Finding support really is something that is not totally appreciated until you realize it actually does help. Hearing from strangers who cannot relate can take its toll, because unless you are truly experiencing the symptoms, most people will diminish what you are feeling. They mean well in most cases, but because “you don’t look sick” they don’t take what you are going through seriously.
When support is really needed
It’s funny, you don’t often realize you need support until, well, you need support. Having someone who can truly relate to the victory of getting showered in the morning is exciting because they know how much effort you had to exude just to clean your body. There are days when getting dressed is the best you can do, and then there are those days when you feel like you can take on the world … and you do, until the next day when the world gives it all back to you. Those are the days when the support is really needed. The days when you feel you did too much, feel guilty because now you can do nothing, or just don’t understand how you can go from being on top of the world to the world being carried around on your shoulders.
It’s sad to say that for so many, it is the familial support that is lacking. Comments that aren’t even well-meaning are often shared with those we love. Things like I’m in pain too but you don’t hear me complaining; you’re just looking for attention, there’s nothing wrong with you; you are just lazy and don’t want to work. These are heartbreaking things to hear from the people who are nearest to you.
This is exactly why support groups are necessary. We need to be built up, our bodies are already in rebellion and whether we want to admit it or not, that comes with a lot of mental hurts as well. Knowing you have someone who can encourage you does not always have to come from those nearest and dearest. There are so many stories of people who suffer alone or in silence because their initial diagnosis was met with such negativity, they keep what they are feeling to themselves. It does not have to be that way.
One truly amazing thing about social media and the internet is it has brought countless people together for a cause. There are so many helpful resources online and when you are battling those high fatigue days and just need a place to vent, you can do it from the comfort of your bed or sofa. You can’t beat that with a stick … and who has that kind of energy anyway? 🙂
If you are looking for just a couple of great places to go, one is The Autoimmune Box. This group focuses on all autoimmune diseases and puts a great amount of attention to nutrition. What we put in our bodies can make us feel better, and here we feed our need for support and our need for good gut health. The other group is called Lupus Loud, a much larger group. One of the things important to a support group is that you don’t feel beat up or “woe is me” after spending time there — and Lupus Loud is this kind of group. You can vent and be yourself, but know that you will be uplifted and encouraged as well. Hopefully this gives you a couple of great places to find others who can relate, especially if you are not getting the “love” from your loved ones.
What groups do you belong to?
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.