10 Things I Didn't Realize Would Happen After I Was Diagnosed with Lupus. | My Meena Life

10 Things I Didn’t Realize Would Happen After I Was Diagnosed with Lupus.

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.

 

Anxious hands. | 10 Things I Didn't Realize Would Happen After I Was Diagnosed with Lupus.

 

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.

 

Photo of stacked pill bottles. | 10 Things I Didn't Realize Would Happen After I Was Diagnosed with Lupus.

 

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.

 

Various healthcare paperwork. | 10 Things I Didn't Realize Would Happen After I Was Diagnosed with Lupus.

 

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. Click To Tweet

10 Things I Didn't Realize Would Happen After I Was Diagnosed with Lupus. Life with lupus. | Lupus Diagnosis. | Being diagnosed with lupus. | What is it like to have lupus? | Living with lupus. | Lupus warrior. | Lupie.

16 thoughts on “10 Things I Didn’t Realize Would Happen After I Was Diagnosed with Lupus.

  1. 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.

    1. 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. 🙁

  2. 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.

    1. 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! 🙂

      1. 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!

  3. 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

  4. 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.

    1. 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. 🙂

  5. 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 🙂

    1. 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. 🙂

  6. 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.

    1. 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.

Comment here!