I was diagnosed with Systemic Lupus in September 2010. I spent the entire weekend in the bed, depressed and throwing myself a pity party. Until I thought about it; I have never been a quitter; and I’ve always led by example. I was only 27 at the time and, you know, it actually felt good to know WHY my body felt like it was falling apart. I still don’t understand and I do sometimes doubt the doctor’s diagnosis. I’m scared still. I have young children that I can’t even throw a ball with because of my 5 shoulder dislocations (ortho says I’m too young to operate on). I also have bad knees, Raynaud’s Phenomenon, degenerative disc disease & hyper-elasticity of the joints…. I think. Or it may all be the Lupus. I have so many questions – but my PCP doesn’t want to answer. Just a prescription once a month for narcotics. I only recently began prednisone.
I WILL BEAT THIS IF IT KILLS ME!!! What makes me the angriest is that I am unable to do anything. This depresses me. It doesn’t help that my PCP wants me on disability. I’m not a quitter is what I tell him each time. I want to finish college & be a successful adult/citizen. I have anxiety problems which makes me not want to hang out with friends & recently have noticed a decreased libido. Which is very uncommon for me. My fiance’ isn’t excited about it either.
I don’t feel as if my friends are a support group. I just feel judged because of the pills I take. That’s not a good feeling. They all tell me I don’t need them or that they’re worried about me but, honestly, with the pain that I have that NO ONE else understands, I wouldn’t be able to take care of kids, home, dinner, etc. I need a positive support group. Anyone want to help?
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
First of all the only judgment that you should be worried about is the day you go home to our creator. My grandmother had Lupus and it was never diagnosed. She was treated for years for a heart problem and that was the last thing that shut down on her. The Doctors didn’t detect it until it was too late. They had pumped her with so much medication that she was allergic to that it sent the Lupus into a full blown attack.
If you are not comfortable with your PCP please take the time to find someone who specializes in this. With proper care you can lead a normal life. I have another very close friend of the family that was taken to the hospital and diagnosed with Lupus about 25 years ago. We were mere teens and now in her 40’s she is still going strong.
I was diagnosed with Lupus in 2005, so I understand how you are feeling. Even now I still have the occassional pity party, get super angry and ask what the hell did I do to deserve this?? But Sweetheart, you have to know when to let it go and fight. You, yourself said you have never been a quitter, so now IS NOT the time. Google “Lupus Doctors” and your area and you should be able to find a Rheumetologist that has experience with lupus. I was lucky enough to find a lupus clinic here in Atlanta, so hopefully you can find the same. I know what its like to be pumped full of pain meds because the Dr. Doesn’t know or doesn’t care. So unfortunately, you’re going to have put in the work to take care of you. Ask questions, don’t take no for an answer and for those judging you, ask them if they have a better idea and if not, are they willing to help you find one, if not, they can kick rocks! I know its hard, but stay positive, concentrate on YOU & staying well for those babies, that’s what keeps me going when I think I can’t.
Also, google “lupus suppport groups” in your area. I will keep you in my thoughts and prayers!
Love & Blessing
I so understand what you’re feeling! I was diagnosed in 2003 at the age of 32. My two boys were only 2yrs and 4yrs old and I wasn’t able to be a mommy to them and a wife to my husband. I felt useless, depressed that my parents, sometimes my sister had to come and take care of me and my children. I was put on so many different medications with so many side effects. There were family and friends that thought I was just being lazy to get out of bed or clean my house or bathe my children. I gave up trying to make them understand that even though I didn’t look sick I was very sick. It was up to them to learn about my illness if they wanted to be apart of my life. Now, with the support of my husband and kids I am doing alot better. I too was not going to let this illness run my life and my family’s life. I started doing water therapy and from there land exercises. I can proudly say that I now am doing zumba at least 3 times a week and it has helped me feel better. Don’t get me wrong, I hurt afterwards, but for that one hour I forget about my illness and feel like myself again. I took baby steps to get where I am today. I pray for you and your family and you have so many new friends now, and we are always here for support!!
It’s hard when you are young, and your friends are young to understand a disease that effects every single thing in your life. I don’t have lupus, but I have kidney disease and am on dialysis. I too have lost friends because I just can’t do the same things I used to do. I call those my “good time friends” they are there for you in the good times, but are no where to be found in the bad. It sucks.
The only people you owe anything to are your children, and anyone who can’t understand that isn’t really your friend.
It sucks to be so young, and have the weight of the world on your shoulders, and it’s ok to have a pity party for yourself every once in awhile. I find it cathardic. Those pity parties that take you so low, make you climb even harder.
I support you, I don’t know what it’s like to have lupus, but I do know what it’s like to put on a smile and act as if everything is alright.
My friend said to me “People who are really sick, don’t complain, they just want to feel better. Those who complain about all of their ailments all the time, aren’t really sick, they just want the attention.”
The reason your friends think you don’t need meds is because you put on that great big smile and when asked “what can I do for you” you smile and say “nothing”
Reaching out for help isn’t going to bruise your pride. This is a hard lesson to learn when you are a strong independant woman. …I learn it every day.
<3 Hugs <3
I was diagnosed with lupus at the age of thirty-two, back in the eighties. I was able to maintain on poor health insurance with the use of painkillers. It took about ten years to get the right diagnosis, during which time I had six miscarriages, and all the aches and pains of lupus, along with getting sick at the drop of a hat. In the fall of 2009 I started getting discoid patches on my scalp, and over the next year my hair all fell out. I was put on plaquenil and prednisone then, thanks to a wonderful rheumatologist who actually listened to me and treated me as an equal! My hair grew back in the spring of 2011, all curly this time! And I have just finished decreasing my prednisone dosage to nothing, to see how my body will do on its own again.
I know what it’s like to be told there’s nothing wrong with me, that I look perfectly healthy! I hate it when people say that to me! I know what it’s like to feel like a truck ran over me just because I went grocery shopping. Over the past two decades I’ve learned who my real friends are, and who are just my co-workers or social friends. My real friends help me clean my house when I can’t and they don’t make me feel guilty. I know what it’s like to have to take so many painkillers daily that I worried about tylenol overdosing, lost all motivation and became hopeless. With the help of my doctor and new research, I learned that gentle physical activity like swimming could help me ease my pain at the same time that I became stronger, and now I know that even when my aches and pains are so bad I just want to curl up in bed with my heating pad, that’s the time to get out of bed and move my body. I’ve also learned of other ways to manage my pain without narcotics, perhaps you could look into this in your state. I am no longer dependent on narcotics at all.
As for the disability aspect–it can actually be a life-saver! I applied for disability several times, although I did not get it until last year. However, even when you are in the appication stage, you can work with your state department of Vocational Rehabilitation and get assistance with finding work, schooling, training, etc. to see if you can work at all. It’s a great program and doesn’t cost a dime!
Now that I am on disability, thanks to Medicare, I can actually go to see good doctors who know what I’m going through. When I had no health care, all the doctors would do for me is give me narcotics
Hang in there, hope some of this helps, and know that there are millions of us out here rooting for you!.
My lupus symptoms started @ 15yrs old….it took several yrs and many doctors to get a diagnosis. I was diagnosed with Lupus @ the age of 21…I am now 28 and have two children, I know your pain entirely. Lupus is one of those illnesses that one can’t always tell you have by looking at you…my lupus affects my skin severly ,so out in public I get those stares…but you know, its those people that judge that are ignorant… The people who say you don’t need drugs or you look fine have no clue…and you have to look past their ignorance to the illness…and as for disability, you are not less of a citizen or person if you enroll in disability ..I had to be put on it 3 yrs ago…and I can tell you this…its only until I can get well enuogh to go back to work. Anyone who makes it day by day with lupus is a TROOPER and a STRONG person. The others in your life will realize this soon enough. To help the process print them out some material on lupus, it’ll make them think…. Until then…know your not alone, im fighting the same battle you are, and god wont put more on you than you can handle, we were picked for this illness bc so many others couldn’t handle it and prevail. Good luck!
First of all, you’re attitude is awesome! Second, I completely understand where you are coming from. I was diagnosed at 16 with Lupus (SLE), Fibromyalgia, Reynaud’s, Sjogren’s, and insomnia. I was a junior in high school and found out quickly who my real friends were. No one took the time (nor cared ) to find out what Lupus is and thought they could catch it; so everyone kind of jumped ship. There was only one person who stayed by my side – he is now my husband. I hope that even though your fiance is less than thrilled about your decreased libido, he is understanding enough to know it’s beyond your control. It is understandable while you’re still adjusting…or anytime for that matter. Sometimes you’ll feel a little off or insecure but it won’t be ALL the time.
I was very depressed when my Lupus journey began, confused and devastated by how unfair it all was. All of my friends were going out and staying up late while I was tired and wanted to be laying down so I wouldn’t hurt so badly. I had just gotten my driver’s license but couldn’t drive because I was either in too much pain to even grip the steering wheel or was too foggy-headed from pain meds. But then I made an important decision: I was going to fight.
I am now 26 and next month marks 10 years since my official diagnosis. I know the ups and downs of being sick and what it’s like to feel so alone even when you’re surrounded by people. I’m not an expert and I’m not going to tell you how to handle anything in your own life, as each person is completely unique. However, I will be your support group. If you want to talk, vent, ask advice, or just complain I will be your judgement-free sounding board. If not, keep fighting – it is still difficult but it gets better.
Good for you for not letting Lupus take over your life – for wanting to fight back and living. I was diagnosed with Lupus SLE at age 45 – which is not common. I am sure I had it for years, but I always just thought being a mom, and a mom of a special needs child it was “normal” to be so tired and sick all the time. I have SLE, Reynauds, Thrombocytopenia, Pernicious Anemia and Chiari malformation I. I am a marathoner. I took up running – no matter how painful my body feels, I still run, some days I walk, but I move every day. My Dr’s tell me to keep moving, that moving is one of the best things you can do when you have a chronic illness. I also work closely with an RD and control my flares with diet. Accupuncture and massage therapy are godsends….
I love that you are determined not to let Lupus win! Though I don’t have Lupus I can related to long term illness. I am a survivor of both Hodgkin’s Lymphoma (@ age 22) and Breast Cancer (@ age 47). As a result I have developed several chronic illnesses that require daily meds that I’ve been on since a young age. I get really sick of taking them.
This last battle with cancer and the accompanying chemo really brought me to my lowest point in terms of overall health and I really got sick and tired of being sick and tired.
A couple of things I learned that you may find helpful:
1) If you are not comfortable and happy with your doctor keep looking until you find one that “fits”
2) Have vitamin/mineral levels checked to see if you are low. I found out I was really low on D and though I wasn’t “technically” anemic my Iron was low. The right supplements helped a lot.
3) I found that any foods which contained MSG or NItrates (smoked foods, lunchmean, hotdogs, etc) really made me feel like crap. Though I didn’t eat a lot of them to begin with when I eliminated them from my diet completely I felt better. You’d be surprised when you become aware that restaurants like to put bacon in friggin’ everything.
4) I upped my vegie/fruit intake. Aside from the above, I didn’t cut anything out of my diet but the more fruit/veggies I ate the less room I had for other stuff. After that I began eliminating other prepared packaged foods from my diet.
5) After each cancer diagnosis I became more aware of the people in my life that are truly valuable and the ones who were only friends as long as it was fun. It may be helpful to find a support group in your area. Ask your local hospital social work department for a recommendation if you can’t find one. Just be careful that the group is actually supportive……sometimes co-miseraters can bring you down further.
6) Though there were days I couldn’t walk to the mailbox I pushed myself to get some regular activity. I discovered I really liked Yoga because it made me feel strong even when I wasn’t.
7) Don’t let anyone talk you into applying for SS Disability if you don’t feel like it’s the right thing for you. I was on medical leave for a year in 2010 and my disability carrier insisted I apply for SS. I refused for the same reason you did….I am also not a quitter and one year later I’m back to work full-time. I was afraid that if took that path I would begin to feel and behave like I was disabled. Looking back I’m glad I didn’t do it. Of course that’s a personal decision but I can relate.
You keep taking care of yourself and find yourself a healthcare community and physician who are skilled in treating autoimmune diseases. Have faith in yourself and in your body. You are in my prayers Raven!
You will find lots of support here (and count me in that group as well!) . I have Ehlers-Danlos Syndrome, and was diagnosed about the same time you were. I get so much of what you’re saying. And thankfully, here, so do many, many other people 🙂