Finally Finding A Lupus Community
I am going to tell you right away that I am not a USA citizen. I live in Europe, close to Brussels, which is considered it's capital by many - next to being my country’s capital. You could say I am quite far away from home, but when my own research finally brought me here, it felt like coming home. I have finally found people dealing with the same disease I have been battling myself.
I have lived in the dark, being only the shadow of the woman I used to be before. I had to deal with my affected body and mind, but what was even worse for me personally was the incomprehension and disbelief of my environment. I have read that there are people in the USA that are still not aware or educated about this disease. I can tell you that the difference in the knowledge over here is incredible. Almost no one I shared information with knew what I was talking about. On the contrary, the people who should support me the most, like my parents, criticized me in the most painful way by insinuating I was fain, over-sensitive, weak, exaggerating, taking advantage… as if I made this disease up or at least complained too much as if it could never be this bad or hard as I made it look.
Navigating years of gaslighting
Another comment was that if when they start searching and keep on searching they will eventually always find something one can complain about. It is true that it took a long time to research, test, and visit a lot of doctors until I finally started to get some answers. I really wanted to know what was happening, not just want them to find “something.” I have had moments I was doubting even myself if I was possibly losing my mind, especially when one of the doctors I visited to get answers could not explain what I was experiencing and told me that I was hypochondriac. Even when I was diagnosed with Lupus SLE, afterward with a primary immune deficiency and idiopathic neuropathy I never received a lot of information.
Finally getting a diagnosis
Knowing what I know today, I can say that it all started when I was a teenager, long before it was linked to Lupus. After giving birth for a second time, my newborn daughter suddenly got very ill, having an extremely low platelet count, a rash, and was unable to eat. They could not explain what was happening, even fearing she might not survive. Unexpected as it appeared, it disappeared after a few weeks/months. But just giving birth and taking care of her 24/7 in the hospital, sleeping on the floor next to her, and worrying all the time for several weeks just broke me, and this is when the disease really got me severely for the first time. I just thought it was extreme fatigue at the time due to the circumstances, but symptoms got worse and multiplied until four years later, in 2016, I had to quit my job as my body was exhausted. It took another 5 years to finally get the diagnosis.
"What I really need is support"
Meanwhile, I became disabled as I was always in pain, tired, and unable to move my arms and legs properly due to neuropathy suffering from balance and off-and-on paralysis problems they still can’t explain today, among several other symptoms, like severe memory loss and cognitive dysfunction. That, too, is often considered an easy excuse when I mention I don’t remember something important or forget an appointment. Struggling with myself, my body, and negative opinions when what I really need is support has been excruciating. I think I am lucky I have my two girls because without them, I would not have been able to cope.
Finding a community of lupus warriors
I can hardly explain what it meant to me to discover this website, among some others, all in the US. When more knowledge becomes available, it will eventually travel overseas, so there is hope for me in the future that I won’t be considered an attention seeker or exaggerating my pain and discomfort, because I have had a hard time even getting access to much-needed help as Lupus SLE (besides the other diagnoses on my list) is not recognized and accepted- even by authorities. I have been fighting not only Lupus but also public ignorance and incomprehension. The hardest part of all this was that the people that should have supported me made me suffer even more by questioning my pain. They do not have the right to do that, it is just diminishing. All of you, all your stories, helped me with self-empowerment as this is the confirmation that I must continue being strong like the strong woman I have proved myself to have been before coping with all criticism in addition to my illness instead of support,
The daily fight with lupus plus
A few days ago, I heard I had cervical cancer after a few pap smears and some other tests, yet a new fight started in this journey. I would never have believed before that I would be able to cope with such things, but here I am. I don’t have another option than fighting. I have to be a present mom to my girls so they have some guidance. I am afraid but I tell nobody. Inside, I am screaming… I hope that very soon the info found by research in the USA will travel overseas so people will understand here that it is a severe condition and not like a cold or imaginary… I hope people here with Lupus will speak up, too and will unite. Now there is nothing and no knowledge and people don’t believe the big impact it had on a lot of levels. Results in all people turning their backs. They only understand it when they would have it themselves so there is a huge need everywhere for people to unite to be heard. I am disabled, probably for life, can’t get any support, and am forced to live at the edge of society trying to arrange things so my daughters don’t have to miss out on everything.
I can’t go out by myself because there always has to be someone with me due to my strange combination of conditions that is unpredictable. Unfortunately, I lost all my friends. In part because I was not able to be the party animal I was before and became annoying to then do yeah; Bye! The other part is that during corona crisis, as everybody was living in isolation, all contact was lost and if I do not hear anything from them first, I am not going to send myself either I am too stubborn to seem needy when I start a conversation.
The power of connection
Basically, I am really in need of new friends. But they won’t come to my door and I can’t go out by myself. Other people with the same problem or, better yet: some ideas of solutions?
Thanks, huns, I am going to shut up (as in stop typing) but fyi this is the first time in months that I have been talking to other adults, and some things just started to pour out now.
As you see I am really in need of some friends. It is too bad that no such chatrooms/ foruns/ blogs exist in my own home country. Maybe I should start one but first of all, I need others to speak up and join me but how the hell do I teach those people without a budget to do so? There are days I am not even able to put food on the table. Another reason it is important to raise awareness: create access for people to help organizations, financial support, administration, medication, and so on…
I can’t take that charge anymore, I am not able to manage it all, I can’t see the bigger picture, and forget things all the time. I am creating a whole that becomes deeper and deeper because there is more month than money I do not even manage to buy all medications needed. Privigen was much too expensive and hyzentra now is not cheap either but ok it is some lower. In front of everyone, I see my daughter passing by, apparently with some work of art they made for our Jeep.
I really am going to have to use duct tape to stop my hands from moving all is not I will never be able to stop typing so much to say, get out, share, ask!!!
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