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Anna's Lupus and it's Link to Mental Health

My name is Anna, I am 25 years old from Ireland. I was diagnosed with systemic and cutaneous Lupus when I was 21 years old. My lupus mainly affects my skin and joints, making some day-to-day activities more difficult for me.  


I would like to talk about lupus and how it impacted my mental health, where I have personal experiences with depression and anxiety. There are things that have helped me, and I hope that other in the same circumstances can benefit from learning about my experiences. 


Lupus can have a direct effect on the mental health of lupus patients. Roughly 25% of lupus patients experience depression and approximately 37% experience anxiety. Brain or lupus fog also effects 70 – 80% of lupus patients at some point.  As lupus is a relatively uncommon illness, in my own personal experience, it can leave you feeling alone and isolated as people often do not understand what lupus is, and how it affects you. 


When I was first diagnosed in 2020, I had seen multiple doctors before receiving my diagnosis. When I was diagnosed, I was admitted in hospital. Lockdown restrictions had also started, which meant throughout all my hospital admissions, I was unable to have any visitors. This took a considerable toll on me as I had to come to terms with my new diagnosis alone. Once I began receiving treatments, I was experiencing complications with most forms of treatments I was being given, resulting in me having sepsis in multiple occasions along with other infections and admitted into hospital sometimes on a fortnightly basis. When all of this was going on, my mental health began to worsen, and I remember becoming very angry and frustrated thinking “this isn’t fair” and asking, “why is this happening to me?”.   


I was down and upset about the whole situation as it was all new to me and I didn’t know how to process it by myself. Not being able to see my family for visits meant I was just constantly playing those negative thoughts in my head for the duration of my admissions. Having had so many troubles with medications and hospital admissions in such a short period of time left me almost hopeless and scared my doctors were not going to be able to find suitable treatments for me. My sleep began becoming severely affected with me not sleeping most nights worrying about being admitted into hospital with yet another failed course of treatment.  


My skin was worsening constantly and when it was at its worst, I had lost my hair, my skin was raw, weeping and broken from my head to my toes and I was unable to walk without the aid of either crutches or a wheelchair. At this time, my anxiety hit rock bottom—I didn’t want to leave the house or see people as I didn’t want to be judge or for them to taken pity on me. When I did go out in public, I dreaded it as I had the feeling people were staring at me and discussing my physical appearance, leaving me with no confidence and always feeling self-conscious, worrying about what they would think or say when they see me.  


I began speaking to my doctors about how I was feeling and asking for advice that might help overcome it.  I was prescribed different antidepressants and anxiety medications to see if they would help how I was feeling. My doctors also advised I look into online support groups, giving me information leaflets about different websites and charities that might have been able to help with how I was feeling. I joined some online groups on Facebook and in my personal opinion, I find they have helped me greatly as they have allowed me to connect with others in a similar situation. 


During lockdown when I was unable to walk, I found comfort in using mindfulness activities such as colour pages and journalling. It gave me the ability to put my thoughts and feelings down on a page and free them from my mind. I enjoyed sitting in the garden or conservatory playing games and reading my books as they offered me an escape from my worries and problems even for just a while.  


 I am fortunate enough to live in an area close to the sea and mountains, so I am able to go for walks, which is a great way for me to be able to clear my head. Physical activity for me helps with my mental health as it gives me the ability to refresh and restart—even just going to sit by the ocean helps me relax and unwind. Going to the gym and swimming not only helps me physically, but also allows me to have more positive outlook and overcome some of the troubles and feelings I may be having.  

Mental health can be a difficult topic for people to discuss as there is still quite a large stigma around it. But it is so important if you are struggling with your mental health to talk about it with someone or find ways to help and try to improve your mental health as it will make you feel happier, have more confidence and may help with your physical health. 


I hope this offers some support to others who are struggling with their mental health along with lupus.  


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