I've never done anything like this but I'm feeling so alone. I have NOT been diagnosed but have symptoms upon symptoms that are spot on with lupus I have a rheumatologist appointment coming up so fingers crossed on answers. My question is how do you cope when you feel alone in this and misunderstood? My mom knows all the symptoms and knows it's most likely lupus but is also in denial. I can't eat certain things and my boyfriend is upset about restaurant choices or me not being able to do things I said I… read more
In all honesty, I don’t talk about my lupus very often (unless it is with this group). My husband and kids know code words for my bad days. I am not very social anymore. I have to save my energy for family and work. I don’t give info to my boss or to my coworkers unless I absolutely need to per workplace policy. I have intermittent FMLA to keep my job safe if I am flaring or if I have a doc appt. Some people feel obligated to advocate for those of us with lupus. I pick my battles. You will learn what is best for you. A lot of the coping mechanisms are from trial and error. Concentrate on finding a doc who will treat your symptoms even if he/she won’t provide a diagnosis right away. Advocate for yourself. Use this group as a sounding board. You will find amazing support and a lot of knowledge. Good luck 🍀
I can totally relate and this can be such a frustrating experience to endure. Let’s take everyone else out of the picture atm because they don’t matter as priority. It took 8 years before I was diagnosed, I saw a different rheumatologist every 6 months which didn’t help. Finally I saw the same one for two years running. Just prior to this I got diagnosed with seizures (Epilepsy) then Lupus and Antiphilosolipid syndrome. To be honest I don’t think there is ever a straight answer to how one
Copes. We are all very different and have different levels of coping mechanisms. But to find your light in coping-you have to set aside those that don’t understand, view it as an obstacle if you like. The truth is they won’t ever understand ‘exactly’ how you feel because they are not the ones going through it. First of all I advise to Limit your expectations of others. Secondly, you will find coping strategies, sometimes it takes a while because your body is also trying to cope with everything that’s going on and it’s not easy at all. However, it is manageable. Take one step at a time. Realistically set yourself goals to overcome what you feel you can’t cope with. There are always alternatives I promise, even when you have the toughest days. You focus your energy on the positives, make yourself a priority and do what makes you happy-for example hobbies or little things that brings back the life in you! etc even if some may think that’s selfish ;) they didn’t understand in the first place right👍🏼 You can do this -persevere... keep moving forward it diesn’t Matter what others think. Find out about we’ll being services and so on in your area that may be a good support and make the most of them! Always here if you need a chat ;) takecare, chin up! You got this😉
My boyfriend has Lupus and was indenizar for the longest regarding symptoms. We had to change his diet completely and HE gets mad when I say “nope-can’t eat that, or has to be gluten - free” so your bf should be super supportive bottom line. Lupus is an autoimmune response to your body not getting enough nutrition. Stress plays a HIGE roll. His is very debilitating to where he lost sensation in his hands, could barley walk, slurred speach..once we switched the diet and it seems to be getting better. I believe lupus can be reversed. Medication will only make it worse so we went the natural route
This is a wonderful site just found it last year your not alone. Its scarey to be diagnosed, but at least its not all in your head especially the fatigue.
Hi Breanna, it is really difficult for others to emphatize with us. Some can't deal with the fact that we are in such pain and prefer to put it under the rug, others simply don't care enough.
You will have to find your own way of coping, and value the people that to do understand. Being ill also makes us more sympathetic with others pain, and you never know the people you will come across in your life and treasure forever.
In such a point of view, we should be happy our loved ones can't understand, so they haven't lived it. Some people advice to take them to doctors appointments. I haven't been sucessful in that approach or any, so I tend to only share with other lupies, or others with chronic illness. When you are not well mentally you tend to look for support, if you have a stronger mental predisposition it will hurt less, when someone doesn't remember your doctor appointment.
I fight loneliness being active and doing activities for my well being, like going to the gym, learning languages, traveling when I can. I also started to do things I have never experienced and learning new stuff that gives a sense of self accomplisment.