Being diagnosed with lupus was a bewildering experience for me. Suddenly, everything made sense – the joint pain, the rashes, the fatigue, the swelling… the endless appearance of new and strange symptoms. Yet, at the same time, nothing seemed to make sense. No one in my family had an autoimmune disease; I’d barely even heard the word lupus spoken before.
It’s been eight enlightening months since I was diagnosed with lupus, and I feel like I’m just starting to get a grip of this horrid disease. There have been lots of surprises so far on my lupus journey as I’ve tried new things, educated myself, and spent time with other lupus warriors. In this post I’m sharing 10 things I didn’t realize would happen after I was diagnosed with lupus (although there are certainly more than just 10). This list includes the most surprising changes and the ones that have been particularly difficult for me to accept.
10 Things I Didn’t Realize Would Happen After I Was Diagnosed with Lupus.
1| I didn’t realize that I would start to hate sunscreen.
I’ve always been the person who carried extra sunscreen for a day at the beach and made sure everyone applied it properly. I liked being sun safe when it was only occasionally necessary. But sun protection is a daily activity ever since I developed lupus photosensitivity (which means that sun exposure can make me very sick). I have to apply sunscreen every time I step outside my home into sunny weather – even for a quick trip to the store. Not only do I strongly dislike constantly smelling like sunscreen, but I hate that I have to immediately bathe and wash my sunscreen coated clothes and skin after I return home so that I don’t smear the stuff on my bed, couch, chairs, etc.
An alternative to around-the-clock sunscreen use is to cover up my body with SPF clothing. I’m slowly adding long sleeve tops, full-length leggings, and wide-brim sunhats to my wardrobe in the hope that I can greatly reduce my sunscreen use.
2| I didn’t realize that my anxiety would simultaneously improve and worsen.
I’ve struggled with anxiety and agoraphobia for my entire life, and I never would have thought that being diagnosed with lupus would actually help in that struggle. It turns out that one of the few upsides of fatigue is that I’m too tired to be anxious. My highest anxiety levels have historically occurred when I need to leave my home to do something – my mind would race and my fear would skyrocket as the time for me to leave approached. Now, my anxiety gets pushed aside because I have too much to focus on as I prepare to leave, such as packing my meds, applying sunscreen, and carefully conserving my energy. My lupus requires so much effort that there’s not much time and energy left for my anxiety to take hold.
On the other hand, I have a lot more to worry about now that I’m chronically ill. I worry about side effects from medications, sun exposure, health insurance, life threatening flares, and so much more. My generalized anxiety tends to be worse, especially when new symptoms show up. A lot of my everyday anxiety is centered about my pain. For example, I’m afraid my pain will get worse, I’m anxious because I’m in pain, I’m nervous I’ll run out of pain medication, or I’m worried an activity will increase my pain. Severe chronic pain is a scary, nerve-wracking ordeal.
3| I didn’t realize it would be such a private battle.
That may seem like a strange statement, especially if you are a regular reader, because I have been so open about my health struggles on this blog. I’ve tried to be very vocal about my disease ever since I was diagnosed with lupus, but often I found that people simply weren’t interested in discussing it. This was rather startling to me, because people asked plenty of questions when I was attending school and when I was working full-time. Ninety percent of my life was about lupus when I was at my sickest, but only 10 percent of my conversations touched on it. My struggles suddenly felt very private and isolating.
4| I didn’t realize that I would be dependent on things I cannot get on my own.
I often find myself at the mercy of a doctor to provide me with a prescription. Because my body and immune system don’t work the way that they should, I need prescription medications for acute illnesses more frequently compared to a healthy person. Furthermore, I take six prescription medications from three different doctors every day. I’ve nearly run out of these essential meds because my rheumatologist wasn’t returning phone calls or because the pharmacy took a week to restock something I needed. I had an especially difficult time when my husband recently changed jobs and we had a lapse in health insurance coverage. This forced dependence on doctors and prescriptions has been a really difficult adjustment for me. It makes me feel like a child that has to keep asking for permission for something they do all the time.
5| I didn’t realize I wouldn’t necessarily receive good medical treatment.
Before I became chronically ill, I thought that doctors pretty much had all the answers. I would make an appointment for a specific problem and my doctor would always take care of me. This is why I was so shocked when, during my search for answers about my declining health, my various doctors told me there wasn’t anything they could do about my symptoms. They told me that my anxiety and extra weight were the only reasons I was in pain. I felt incredibly let down by the medical community.
After I was diagnosed with lupus, I was angry that my previous doctors had overlooked so many indicators of the disease. Why hadn’t they taken me seriously? Weren’t they supposed to help me? I realized I had to take responsibility for my health into my own hands. I read scientific articles, attended support groups, and asked tons of questions about my disease. I learned so many things that I needed to know about lupus that doctors hadn’t told me. It hurt me that I suffered for so long because some doctors did less than the bare minimum when I thought they were dedicated to helping me.
6| I didn’t realize that I wouldn’t be able to take care of myself.
I don’t like to say that I am disabled, because I can still do most functional things like walk and bathe. Unfortunately, the truth is that I am severely restricted physically and mentally. I can do a lot of things for myself, but I can’t come close to doing everything that is required for me to live. This became crystal clear to me recently when my husband took a week long business trip. While he was gone I went to all my doctors’ appointments and only met my most basic needs, yet the physical effort of attempting to take care of myself made me very sick.
The combination of my joint and muscle pain, lupus brain fog, and the rapid depletion of my energy during any physical activity means that I will always need help. The only likely exception would be if my lupus went into total remission.
7| I didn’t realize that brain fog would be so constant.
Lupus brain fog started out as an occasional annoyance but it became severe over the past few months. I regularly experience brain fog, or cognitive impairments, that hinders my concentration and memory to the extent that I can’t work, drive, or express myself. I spend a lot of time being confused because I can’t think clearly. Sometimes I have to ask my husband something five times before I get it right. The weight of trying to function with brain fog can be so heavy that I would rather retreat into silence. It leaves me feeling uneasy, as if I’ve left behind something essential but I haven’t the slightest clue what it could be. It’s worse during flares, when I’m tired, and when I have to take a lot of pain medicine.
8| I didn’t realize I would spend so much of my life being sick.
I thought that getting a diagnosis would solve most of my problems. The doctors would know what was wrong with me, I would receive treatment, and I would improve… right? That hasn’t been the case so far. Sure, I’ve received lots of treatment and I have improved a little, but I am still grievously sick on a regular basis. Where is this remission that people keep talking about?
I planned to emerge from my illness into a bright new world where I could return to work, travel more, and feel the freedom to achieve things again. Instead, most days I’m balancing in between a state of “I’m so sick I can’t leave my apartment” and “I’m not quite as sick but I don’t feel great and I’m still really limited in what I can do”.
9| I didn’t realize I would contemplate death so often.
The fatality of lupus is not discussed enough, in my opinion. When I was first diagnosed was lupus, I was reassured by the oft-repeated statistic, “80-90% of people with lupus can expect to live a normal life span.” A few months later I realized that lupus can be very deadly and, even if it’s not, can lead to a much diminished quality of life. In fact, before before modern treatments were developed, only 50% of people with lupus lived for five years past diagnosis. I feel especially overwhelmed by the fatality of lupus when I search the lupus hashtags on Instagram (something I try not to do often) because they are full of stories from people who have lost loved ones from lupus.
I am constantly being monitored and keeping watch for signs of lupus nephritis (a condition where lupus affects the kidneys), which is one of the most common causes of lupus related deaths. I’m concerned about the fact that lupus can attack literally any part of the body – even the bones, spinal cord, or blood vessels – because there is no way that my doctors can monitor every part of my body for potential damage. I’m also afraid of developing cancer, organ failure, a deadly infection, or other serious side effects from my medications.
10| I didn’t realize how much this disease would make me appreciate life.
That is, when I’m not too confused, too sick, or too tired to appreciate it. The threat of a shortened life span is certainly a powerful motivator to enjoy each good day I have. Being diagnosed with lupus made my life very difficult, but it also served to clarify my life and ultimately make it more purposeful and rewarding.
If you have been diagnosed with lupus, or another chronic illness, what are some things that have surprised you about your disease?
10 Things I Didn't Realize Would Happen After I Was Diagnosed with #Lupus. Share on X
I can relate so well to number 5 about not receiving good care. Since my pain issues began, my trust in doctors and the medical community/industry in general has been steadily eroded. I've been sent from specialist to specialist and back to my general physician without getting any straight-up answers. It's like each doctor wants to do as little work as possible and not make any concrete suggestions other than things I already know or "you may just have to live with it." I never thought receiving medical care would be like that. Since I've typically been healthy for most of my life, my experiences with doctors before this had been limited mostly to preventive care and treatment for easy, common ailments. But as soon as something a bit more difficult came along it felt like no one really wanted to take the time to actually help me. I was even told by one doctor that I can't be having the issues I'd described because I'm too young. I guess before, I had this misguided idea that doctors were somehow special or heroes or something, but being in pain and actually needing help has driven home to me that doctors are just people like us plus medical school. They are not the gods I used to think they were.
It’s so sad that we’ve both been disillusioned in this way. After all, if doctors can’t help us, then who can we turn to? And being told that you have to live with pain and malaise is so unacceptable – anyone who had ever experienced long term pain would never say that. I hate the idea that doctors have given up on us. I hope that you can find a doctor that will take you seriously and help you. 🙁
I remember being first diagnosed with Lupus at maybe 20, and hating to have to wear sunscreen every day, especially in my country's year round warm, humid climate. I gradually stopped using it and learnt that I'm actually okay in the sun (obviously not tempting it by going out for hours during midday). When I have to go out for longer periods of time, I use this sunscreen, which feels SO MUCH better on skin than other brands I've tried: http://www.kao.com/sg/web/news_files/biorewaterye…
Hope that helps a little bit at least. Take care Ava, I hope you will feel a little better soon.
My photosensitivity didn’t show up until after I started Plaquenil, so I am wondering if it could be drug related. I’ve wanted to stop taking Plaquenil anyway so that’s definitely another reason to consider it! Unfortunately I can’t view that link that you sent in English, but I will keep looking for different sunscreens to make the process easier! Thanks so much! 🙂
Plaquenil does cause light sensitivity (not just the sun, indoor UV lights have the same effect – you probably already know that but just in case!😊) For me plaquenil gives me skin discolouration that look like bruises.
That's weird about the link as it's in english for me. It's Biore sunscreen in a blue bottle anyway. Only sunscreen I use 😉
In any case, you do what's best for you. Hope today is a decent one for you!
I will check out Biore for sure. Thank you!! 🙂
I think this will ring bells with so many people. I have included your link on PainPalsBlog regular feature Monday Magic – Inspiring Blogs for You! Great to connect, Claire x
Thank you so much, Claire! 🙂
I would love to check out that blog! I have been diagnosed with Lupus since January 17, 2017
While I don't have lupus (have been tested twice) I do have a compromised immune system and can relate a lot to what you wrote. I think the biggest thing for me when I was diagnosed with Fibromyalgia is that it seemed to explain things that were previously diagnosed as mental illness (brain fog, depression, anxiety). When I was changed from those medications to pain meds things started to turn around.
I understand what you mean, I was prescribed anxiety and depression meds for my pain and they didn’t help me at all. It’s tough when things like brain fog and anxiety are treated as causes when they are actually symptoms. I’m sorry to hear that you also have a compromised immune system, wishing you lots of spoons. Thanks for stopping by and commenting. 🙂
I have a friend whose husband has Lupus and I know that it is hard I just didn't realise exactly what they live with on a daily basis…..Does diet help or not…I am very interested in Natural Medicine but I certainly don't advocate stopping prescribed medicines at all just sometimes stopping or eating more of certain foods alondside traditional prescribed medicines can help ad make life easier…I will have to do some research…I just find it interesting but I also find it worrying how difficult it is to get a proper diagnosis of an illnes and am shocked as I read this more and more frequently. An interesting and informative post 🙂
I’m so glad that I could help you understand some of the things that your friend and her husband may be struggling with. Diet can certainly help with lupus, for example people with lupus should avoid nightshade vegetables since they’ve been shown to aggravate symptoms. It is definitely scary that it takes so long to get a correct lupus diagnosis, especially because the disease can really do harm during the time spent seeking a diagnosis. Thanks for stopping by and commenting. 🙂
I can relate to most of these feelings. We have such hope, that is dashed often. But, I too, am thankful to be alive 🙂
I’m glad to hear that. 🙂 Thanks for commenting, Lisa.
This is one of the most courageous pieces I have read in a blog. Thank you for sharing. While I do know some people with lupus, I don't live close to them so I don't really understand what it means day-to-day. I can begin to get a glimpse through your writeup. Thanks.
Thank you so much, your compliment really means a lot to me. I’m so honored that my writing could help others to understand some of what people with lupus and other chronic illnesses go through.
Your writing is spot on about lupus. I feel like sometimes doctors don’t believe in fibromyalgia. Having a systemic lupus flare-up and fibromyalgia are tough diagnoses to live with.Until a person experiences the side effects, they have no clue about a person who lives with lupus and fibromyalgia symptoms on a daily basis. I hurt daily and have been through a rough time since December 2017. Throughout all of the above, I had to have a total hip replacement and this past May 2018 my right hip just broke! It’s been a nightmare for me. I have a great support system at home. My husband is awesome and my 10 year old daughter is so shy but yet so lovable! Thanks for sharing your story!
Wow, you really have been through a lot! I’m so glad you have a great family. I have a lot of muscle pain in addition to lupus (may be fibro related) and no one in the medical profession seems to care about it like they care about lupus. It’s really tough!
What a beautiful and articulately written article. Thank you for sharing. While I don’t have lupus diagnosis, I have RA and several lupus symptoms. I can really relate to the brain fog. It’s at its worst when I am stressed at work. It’s gotten so bad, it’s embarressing and I can no longer cover it up. RA can be deadly too. I’ve had more problems with lung manifestations than joint pain or damage.
Thanks you so much, Mary! I’m familiar with RA because my mother-in-law has it – and it can definitely be very similar to lupus. I’m sorry to hear about your struggles with brain fog, that is so frustrating! Thank you for such a thoughtful comment. 🙂
I was just diagnosed with Lupus this week by my PCP after over a month of debilitating symptoms and positive ANA and ANTI-AGING fed results. I feel so lost and completely overwhelmed and just don't know where to turn. 😭😭
I'm a single mom and depend on my ability to work as a software developer to support myself and my 13 year old son. I've battled Narcolepsy since I was 17 and now am fighting Lupus alongside it at 33. I missed so much work when the symptoms began that I have no idea how I will pay my bills this month. We've always had a fixed income with no wiggle room to save and now my son and I could get evicted.
I don't know where to turn or what to do. I'm struggling daily to fake my way through it and (somehow) have been forcing myself to go to work in spite of relapsing symptoms. And the Rheumatologist can't get me in for a month and a half! Does anyone have any advice?
I’m so sorry to hear about your diagnosis, Misty. Fighting lupus is a difficult and exhausting battle. I know how hard it is to try to function when your symptoms are debilitating. Are you able to take short term disability or sick leave? Can your PCP go ahead and start you on some lupus medications, such as plaquenil and/or prednisone, while you are waiting to see the rheumatologist? I’d encourage you to reach out to a local lupus support group if there’s one in your area, they may be able to help you a great deal.
I was diagnosed with lupus. The doctor said it was like a one percent. Do I have lupus? I have osteoarthritis sciatica gout swelling stiffness in the shoulders. Headaches have rashes in my face. Fatigued tired. Thank you anything will help.
Anyone thanks again
I’m not sure.. rashes in the face are very common with lupus. If you are unsure perhaps you should get a second opinion.
Rashes on the face are common with Lupus – this is called Discoid Lupus. Hope this helps.
The malar rash can happen with systemic lupus without additionally having discoid lupus. If there were lesions or severe rashes then I would definitely get checked out for discoid lupus.
I didn't realize that because I have lupus, my family would abandon me. I've had to cancel plans last minute because the anxiousness of going would put me in a flare, therefore, my daughter does not see me anymore. I can't drive, nor do I work. I haven't seen my beautiful granddaughter since last Christmas. Except for 5 minutes at a dance recital. I wasn't invited to her birthday party. Now when I need her the most, she doesn't need me or my problems in her life.
I’m so sorry to hear that Kathy. 🙁 I hope that something can bring you together again. I also hope that neither your daughter nor your granddaughter ever develops this disease, since it often runs in families.
I was diagnosed with lupus nephritis when I was 21. I almost died and was on dialysis for a year. Finally my lupus went into remission but now at 36 I have developed blood clots which has given me extremely heavy periods causing dizziness and fatigue. I always new I wouldn't live to be very old but it feels like my body is completely breaking down already. It's so hard when you can barely get out of bed everyday and all you want is to be normal
I’m so sorry to hear all this Lisa. I have the same thought, that there’s no way I can live to be old, but it’s different when you feel like it’s starting to happen. Please let me know if there’s anything I can do. Thanks for reading and commenting.
About 4 months ago I was diagnosed with lupus after being ill on and off for more then a year long. Doctors couldnt fine the problem why I constantly fell ill. After being admitted to hospital and two weeks later to fine ive got lupus, a word ive never heard before. I told myself remain positive things couldve been worst dont be scared you can do this. Now daily I loss that positivity as the anxiety of a flare and the constant pain takes over.
I’m sorry to hear that, Charnell. I am glad that you got a diagnosis – that should help you to start improving. I know it’s really hard when you are anxious and in pain every day. Hopefully the treatments will start to work for you, for many people with lupus it takes a year or two after diagnosis for them to stabilize. I hope you feel better soon.
Not gonna lie, this post made me cry. Because it validates everything I'm feeling (just diagnosed after 12 years of misdiagnosis). Thank you, Meena.
I’m glad I could validate what you’re feeling. Twelve years is such a long time to wait for a diagnosis. 🙁 Thanks for your comment, Elizabeth.
– Ava
I was diagnosed with SLE October of last year. I never imagined this disease would be so hard to contend with. I take Plaquenil, Prednisone and Methotrexate and my inflammation levels are still out of hand. The fatigue, extreme malaise and pain is bearable. Thank you for sharing your story. It makes it easier to help distinguish whether it's the Lupus or if I'm just being a baby. I fight every day to get up and go to work. I'm a supervisor and I have to be there. I have to work to keep my insurance so I can get my pills and pay for doctors. I'm still waiting for this "remission" I keep reading about too. Not looking forward to the day I cant work anymore. Thanks again for your story. It really hit home.
I’m sorry to hear this Angela. My inflammation levels are still out of hand as well. My fatigue is so bad I recently tried Benlysta. I’m still seeking answers for my pain. It’s such a hard disease to deal with! I definitely don’t think you’re being a baby – almost everyone I know with lupus finds the symptoms to be unmanageable and unbearable frequently. I’m so glad that sharing some of my story could help you. I hope you get a nice vacation or a break of some kind soon. 🙂
Humira and Name Brand drugs made a big difference with my Autoimmune issues. Hello, my name is Mel Ball, I have delt with heart issues and Trasit Ischmic Attacks for years with no diagnosis for why they were happening. Three years ago I was involved in a car wreck and about a month after this accident I started having severe pains in my legs. My PCP thought it was blood clots, so he put me on Warfin, which caused me to have severe pain all over my body. I have had problems in the past with generic drugs, so I asked to be put on Coumadin instead of Warfin, and in a week my severe pain was gone. Although, my problems were not gone. My muscles stopped responding to my brain's request to move. It took me a month to get in to see my PCP and two more months to see a Rheumatologist. My RA doctor placed me on Methatraxate, which would allow me to have 3 days of no pain, then it would all come back. I had to ask my RA doctor if I could try Humira. Now I take a Humira shot every 2 weeks and Methatraxate every weekend. I thought I was on the road to a complete recovery until my need to change insurance. There was a 4 day lag in getting my Humira shots, during this time my muscle went flacid and I could barely walk, stand-up and/or dress myself. I was dissapointed that I wasn't improving. When I was able to finally to take my Humira shot again, my muscles were back to normal. I don't know if Humira is right for everyone, but it made a night to day difference for me. Also, ask you doctors if you can try the name brand drugs over generics. Your doctor will have to tell your insurance company that you respond better to name brand drugs, if they do help you improve. May God's healing hands be over all of his hurting people.
Hi Mel, so glad to hear that you’ve found the right combo of meds for your health issues. You’ve really been through a lot, and insurance changes are the worst! They can cause so many issues. Thank you so much for your tips and well wishes. 🙂
I was diagnosed with lupus over 25 yrs ago, I am still alive but was at death doors in intensive over 6 years ago. I take one day at a time . I have ups and downs. Broken marriage, lack of understanding in relationship . Pumped up with loads of medication. I am still alive , I was told when I was ddiagnose, I would be lucky to live 10 yrs
What a terrible experience that must have been to be so sick. And I’m sorry to hear about your relationship and having to take so many medications. It’s a hard road. I’m so glad that you’ve made it this far though! Thank you for sharing. And keep going one day at a time. 🙂
I have recently been diagnosed with lupus and I have hashimotos thyroid disease. My diagnosis was a fluke. I have suffered for so long. The thing that has hit me is that I lie everyday….when people ask me how I am I always say fine. I am not fine and haven’t been for a very long time. I have zero energy, yet I still work. My diagnosis is only 2 weeks old but in hide sight I see all the puzzle pieces fitting together. Right now I am researching as much as I can because the medical community is indifferent and fails to offer up anything pertinent to my situation. I am proactive as far as taking supplements and trying to keep my stress in check. I have been thinking a lot about my survival. I am fighting depression tooth and nail. See what the future holds
Shelley, I know it’s very difficult to adjust after receiving a lupus diagnosis and I appreciate you sharing some of your story with me. I felt the same way for a long time about people asking how I am – there was such a discrepancy in what I could tell them in a brief, casual moment and the reality of what I was going through. I think that as long as some people know how you’re doing, then you don’t have to worry about all the others who don’t. It’s really good that you are trying to learn and research – it will benefit you so much. Have you looked for a lupus support group? I found one through the Lupus Foundation and it has been the best thing for me. I know exactly how you feel as far as worrying about survival, I used to panic every time I went in for lab work and I’d worry that my organs would be damaged from lupus. But so far I’ve been fine, just following my doctors orders, taking my meds, and sticking with lifestyle changes. Just do the best you can. I’m sorry you’ve suffered for so long and I hope you find relief soon.
I woke up one morning and my ankle was swollen could barely walk it was so painful, then other parts of my body started swelling up, fingers toes etc. Went to orthopedic dr after xrays showed nothing it was suggested i go to a rheumatologist, well couldn't get an appointment for 6 months! What! I'm in pain, feel like crap! After much prayer God got me into a rheumatologist that was farther away but i didn't care, long story short after much bloodwork i got diagnosed with lupus, nobody in the family has it, came out of nowhere! What now, many meds, fatigue, feeling foggy, pain, not good sleep, depression, early retirement from barbering. I have good days and bad but I'm very grateful because I rely on Jesus everyday and he helps me! He's blessed me so much, I try not to take anything for granted, each day is a gift, spend it with those you love, bless others when you can, never give up and never stop praying!
Chris, isn’t it stunning that swelling like that can happen so fast? That must have been pretty scary and I’m sure painful. I’m glad you were able to get in to see a rheumatologist more quickly – you certainly shouldn’t have to wait 6 months after having symptoms like that. I’m sure that was a surprise to be diagnosed with lupus, I hope your family is understanding even though they don’t have previous experience with it. You’ve gone through a lot since your diagnosis. I’m grateful to hear about how much your faith has helped you. Thank you for sharing your story and for your encouragement! I sincerely appreciate it.
I ran across your blog on Pinterest, as it thought I would be interested in your post on Bern, North Carolina (my husband and I just moved to South Carolina). It was interesting to learn that you have lupus. I hope it is under control now. I have rheumatoid arthritis, chronic migraines and several other conditions. I remember when I was first coming to grips with my RA and my thoughts were SO similar to yours. Ten years later, it doesn't affect me all the time, but boy when I feel it, I feel it! I am in a flare right now, brought on by the stress of moving cross-country, and it is no fun. My joints are all swollen and painful. I have learned that self-care is so important. I just make the most of every day I am given. God bless and keep you on your journey!
Thanks so much for sharing with me, Linda! And welcome to the Carolinas. It is really hard to accept new(ish) health conditions. I’m grateful to hear that you have good days and I hope your flare resolves soon! Thanks again. 🙂