Lupus Awareness Month: Beth’s Story

Selena Gomez recently cancelled her remaining ‘Revival’ tour dates and I applauded her, I applauded her ability to be so informed about her own body that she knew when to take a break and I applauded her for breaking her silence on her invisible pain. I myself have Lupus, I have Systemic Lupus Erythematosus (also known as SLE), I take regular chemotherapy treatments and I strongly identify with Selena’s battle being a young, ambitious woman with a disease nobody can see.

I was diagnosed with Lupus in November 2013 during my first year of university. I started showing symptoms, when I look back at it, years before my diagnosis. Lupus is an auto-immune disease that can cause inflammation and damage to organs, and joints and for me it causes excruciating pain. I have been hospitalised three times over the last three years of diagnosis due to my disease and my mental health and physical health have taken a beating. I have an unstable weight fluctuation, my skin is uneven, scarred and red and I find it really hard to concentrate.I have taken regular chemotherapy treatments and finally I’m in remission but I could come back into flares at any time.

My daily medication consumption during a severe flare can be either pills or an IV drip, neither of which are pleasant but I know if I want to limit the pain and potentially fatal organ damage I have to suffer the side effects of all the pain killers, steroids and chemotherapy.

 Lupus Awareness Month: Beth's Story 2

The Relationship Effect

I’m 21 years old, I’ve been battling with Lupus since I was 18 and I worry about my future. I worry about dying, my quality of life, I worry about any dreams I have being shattered, I worry about being financially unstable and most of all I worry about being alone. Lupus is so isolating, if I can’t move because I am in so much pain then how do I go to work to earn money, make friends, maintain friendships, see the world and live a good quality of life? Relationships become difficult during a flare up because intimacy is difficult, whether intimacy is defined as a hug or more in this sense. I’ve dated people who I know have been put off by my “lack of interest in loving” or, as one person put it, “you are terrible at relationships because you don’t know how to show physical affection…” I’m not. That’s not true at all. A hug or kiss that is meant to make me feel warmed, loved and comforted in a relationship, during a flare, feels like you are crushing every single bone in my body and sometimes I am simply too proud to admit I hurt because I know that my disease, while not contagious, can burden both of us.

The Future is Now

During one of my first rheumatologist appointments I had to have the most awkward conversation known to my 18 year old self; a discussion with a doctor about the potential for miscarriage and pregnancy complications that come with Lupus, should I get pregnant. As a young woman, children are not on my radar right now but this topic replays over and over in my head about the future. With each new medication comes the same conversation about the importance that I plan ahead for this life-changing event because of complications relating to Lupus and the damage that the medication could do to a foetus. I feel like sometimes I can’t be a “normal” person, don’t get me wrong I am more than aware that pregnancy and events like it should realistically be planned but there is also that worry that I have no space for unplanned events – no matter what they are. Advice given surrounding planning a pregnancy is that a Lupus sufferer should be flare free for 6 months and then attempt to get pregnant but as of yet I am still waiting to be 6 whole months flare free. Sometimes I feel I’m so adamant I don’t want children because when I tell people this, when I say the words “I don’t want children” out loud, it seems like it is my choice to not have children and not that Lupus is controlling my decisions. I bring his topic up because it is not something I typically discuss but I think it is valuable to open up about the severity of the condition.

Barely Comforable in my own Skin

The skin on my face is permanently scarred with what is known as “butterfly rash”. Lupus causes damage to organs, your skin is the largest organ so it’s no surprise that Lupus takes the skin as a victim to its relentless rage. Butterfly rash is a formation of redness across the cheeks and nose in a butterfly shape, it’s a common symptom amongst Lupus patients, especially people with SLE, and unfortunately my rash does not go away. Lupus has caused such severe damage to my skin as the rash was untreated for so long that my face is permanently red across my nose and cheeks. I hate my skin redness, it makes me embarrassed and people frequently tell me all these “acne remedies” for my skin but it’s not acne, it’s Lupus. I do pretty well in my day to day life by covering it up with makeup – the difference in my confidence when I get a “new skin” from makeup is wonderful but I feel like I have to cover it up because I don’t feel beautiful with it and it’s definitely one of the first things you notice about me when you see me. The rash is not exclusive to my face, it happens to my arms, legs and stomach quite often during a flare up and it causes a lot of staring from passers by – I would much rather people ask why my skin looks this way, I wouldn’t be offended, I’m more offended that people stare and make comments such as “that looks contagious, she shouldn’t be out with that” you’re wrong. Lupus is not contagious like the common cold, I cannot pass this on to you.

Lupus Awareness Month: Beth's Story 3
Butterfly Rash Scarring

Mental health and Lupus

Lupus affects major organs, such as the brain, which can cause multiple issues when it comes to mental health and retaining information. The most terrifying thing to happen to me, and it always happens during the worst of my flare ups, is when I have mild amnesia and I go into a huge panic attack. I forget basic information such as my address, age and twice very briefly I’ve forgotten my name, I begin to shake and I feel like I can’t breathe and I have to find another person to sit with me and do letter association where I find an object in a room beginning with each letter of the alphabet until I calm down and collect my thoughts. I have always struggled with my mental health especially with severe depression and anxiety in high school but looking back on this it makes sense – when I would be under a lot of pressure (which is a trigger for my flare ups) I would suffer the most – now I’ve found a medication (chemotherapy) that generally settles my flares and now that I’m in remission my mental health has improved and I’ve been anti-anxiety and anti-depressant medication free for about a year. Lupus undoubtedly encourages my mental health to diminish and it is honestly very tiring. My record for a fatigue nap during a flare up is sleeping for a solid 26 hours then I was awake for an hour before fell asleep again.

Despite my struggle, at my own pace I have achieved so much and while these achievements might be small to some people, to me they are big jumps in life. I’ve successfully graduated with a degree, I’ve got my own first apartment and I’m in my first full time job, I have wonderful friends and a healthy family network, I’ve travelled America for 6 months, I’m mentally “well” more than not due to correct medications and I’ve become a writer for CelebMix. My ambitions are not limited to my illness. My relationship with Lupus is comparable to that of a relationship you have with a sibling – you compromise and make plans to fit both of your schedules – that is exactly what I have to do with Lupus, compromise and take things at my own pace. So when Selena Gomez took a compromise to cancel her tour or potentially kill herself through Lupus complications – I stood with her.

Lupus Awareness Month in the UK is October, to keep up to date with Lupus Awareness Month follow @LupusUK and @CelebMix on Twitter or find CelebMix and Lupus UK.

Written by CelebMix