Psoriasis, Autoimmune.. If you only knew...
Psoriasis, Autoimmune, If You Only Knew.
Content Warning (mention/images of psoriasis, contact dermatitis, anxiety, agoraphobia, body dysmorphia, self harm, suicidal ideation, depression, some images may be disturbing)
* Updated May 29, 2021 💜
I may have been hiding but I'm not hiding or suffering in silence any longer. Autoimmune conditions are something that is not discussed much (when I wrote this) and for many who are really suffering... they aren't out in the open. They are aching, crying and dying inside. I know you are out there. 💜 I know you think no one cares and no one believes you because they cannot see your pain. I know you cover up and only go out when people won't notice...or when you are in remission stage if ever. I know you were full of energy and life, no one could stop you and you cant believe you are in this situation right now. So right here right now Ill be a still voice in the darkness. I’ll stand tall and brave for you. This ones for you!💜
My Monster (poem link) is Psoriasis. It came upon me like a thief in the night, I knew next to nothing about it. No one in my family ever mentioned it, in fact it’s not as common in Black folks. Denial, I spent over a year just trying to figure out what was happening to me. Though I appear clear now, my battle is mostly internally as I am in what would be called remission.
Psoriasis is an autoimmune condition which causes skin to reproduce at a much faster rate then the average person and as a result it causes patches on the skin and underneath the skin in the case of Inverse Psoriasis. These patches can be rather itchy, scaly, sore, unsightly and uncomfortable. It can affect the enjoyment of daily activities, can affect sleep, moods, blood pressure, and internal organs it is often linked to (PsA) Psoriatic Arthritis an inflammatory form of Arthritis. According to Wikipedia, at least 30% of Psoriasis suffers may develop Psoriatic Arthritis in their lifetime. Psoriasis is often misdiagnosed or written off as a rash, allergic reaction or nothing to worry about in its initial stages. Some with Psoriasis only have mild symptoms which don’t affect their daily lives and others, for like myself it took over. There are many treatments but no cure. It is said once you have it you always have it and it may lay dormant. I am in a group where we believe we can cure or at least manage the condition to the point where we can say we are in remission. We fight daily to achieve this.
Here is a bit of my thoughts. I shared in a Facebook group I am in:
" At times I wish I recorded what I went through at the worst before my Summer remission of (P)soriasis but I was too homicidal, too out of it and crying with my face burning cause I peeled my skin off, eyebrows gone , fearing I'd be permanently scarred. Bloody holes in my head from picking at it ...would it ever heal?...and would I ever have a full head of hair again? Would my face reset? Having a restful night was just a fantasy...but I know it would have helped just one person to see they are not alone. I did take pics and freaked out my Facebook friends, but it's only here in this group people truly understand and get it. As cooler weather approaches (my most difficult seasons ) I'm already feeling changes in my skin. I fear I'm turning into zombie mom again...that's what I called myself to add humour to my days. I try to keep myself calm... Wishing the nightmare would finally end... Thinking of many of you in your dark times. You aren't alone in this. Hold on another day... You have it in you. You have come this far...you are stronger than you realize"
Before it happened
I had lovely, beautiful, full, gorgeous afro hair which I dyed jet black, my natural hair colour.
My hair and skin was perfectly healthy, I took it for granted you could say. I didn’t know what I had till I lost it.
A Sudden Change
My scalp was irritated and within a day I knew something was wrong. The photo below was after coming home from the hospital... from a contact dermatitis episode. I was warned NEVER to use any dyes or any irritants in my hair again in the ER. My face would remain swollen a couple weeks. it drained fluid as I slept.. not pretty!
this not only looked bad it was uncomfortable my face stung and itched 24/7 and no matter of washing could ease the discomfort... a good night's sleep wasn't an option then.
I don't have some miracle cure for Psoriasis, Ill tell you one thing its one STUBBORN condition. There is no quick fix there are ways to manage it for the lucky few, while many of my comrades are at their wits end to see a glimmer of hope. I stand arm in arm with them. As I age my immune will naturally grow be weaker and I need to be prepared for anything.
Lessons: Do Not hide, find support you are not alone. Do not allow people to bring you down. You control yourself not others, give it to God, or your spiritual beliefs system can bring your comfort. Keep negative people out of your life if possible, otherwise you’ll need to adjust your reaction to them. Life is too short to let others drag you into their misery. Stay positive, positive vibrations, let me explain, I cannot stress this enough...before you attempt to give me a virtual punch in the throat, I know being positive is probably the last thing you can think of during difficult times but if it means putting on your favorite tunes, turning on a comedy show anything to raise your endorphin levels and give your immune a boost do it!!! Laughter is great medicine. When I didn't have the energy to read my Bible, I turned on my audio Bible and let it speak to me. Grab your favourite tunes, movies, people to help lift you up. Make sure those positive vibrations keep flowing around you even if you are feeling horrible. Let it flow through your living space. You can’t control your illness but you can control your environment. Use candles, incense, diffusers, aromatherapy etc, so your surroundings are calming. Add your favourite colours and textures to your room. Cleanse, I know what some of you are thinking , she probably didn’t bathe! Wrong, I can’t begin to tell you the things I tried to cleanse my body with to rid myself of what felt like a curse. I’m ashamed to even say what I did...I looked up everything! I used bleach, borax, turmeric, need oil, sea salt, bug spray (I was desperate), lemon. I used ice cold to boiling water on my skin. I wasn’t dirty, I was ill. It did however make me more aware of how the seasons and climate, air, food, and stress affect my skin, a valuable lesson. Cleanse your body, mind and spirit, get the spiritual and emotional junk out. It’s good practice for anyone. Being ill could mean you may be isolated from friends and family and alone in your thoughts. Be careful what you replace that time with. Its a time to look deep within. If you are housebound or bedridden, this may be your time away from work, school or regular duties. Its your ‘me’ time use it wisely. If you’re like me and have other responsibilities, you may need to find ways to make life more manageable, delegate tasks, de-clutter, sell unwanted items and make space to prevent injuries. Don’t forget to rest too!
Ask for help. One thing I was afraid to do was reach out and let others help me, it delayed my healing process. Being a single Black mother, the world already looks down on us and blames us for so much, how could I ask for help? When I did I had to knock down many doors for much longer than I should have in order to be heard.
I cut my hair all off several times to medicate and to ease the discomfort eventually it let up and Ive been growing my hair ever since.
I often looked like a burn victim inbetween flare ups
After finally getting a proper diagnosis from a dermatologist, I took topical medication for over a year then eased off to prevent thinning of my skin. Flare ups would continue for a few years to come...patience, prayer, managing stress and education about psoriasis helped me through this hellish experience. There is no quick and easy fix for Psoriasis it’s a chronic autoimmune disease. I am in a continual state of learning about autoimmune diseases and management. I am on a health journey right now, my lifestyle journey began years ago and It will continue as long as I have fight in me.
Drop some humour on it, no face zombie mom, that was my nickname. I needed to laugh, why not at myself? My face is erased, at least I have a personality right? LOL That’s what I relied on to get me through, my heart didn’t change. 💜
Acceptance, some point I had to accept that this was going to be my reality and my face may never be my face again. I lost my face (my looks) at a time when women should be showing it off. After 1, 2, 3 years of believing I could beat the illness , I became depressed, I didn’t think I’d be ill for so long. I felt helpless and defeated. Somewhere along the line I decided I had to live again. I started going out, it was scary. I struggled with leaving my house due to past trauma but this blew it over the top. I had developed a fear of connecting with people. The inward trauma manifested outwards. I needed others it was tough to let go of my safe space. I started stepping out again, found a part time position which led to a couple more promotions. I was out again and happy. I was moving around, getting air, socializing and taking the focus off myself. I started healing from the inside out. It hasn’t stopped since. Happiness is a choice, our illness isint. I’m still sick, I’m still in pain , I’m still sensitive to chemicals, dust and the environment but I didn’t lose my personality and something changed inside of me. I found joy in the little things. Oh the grey hair that’s all natural. I didn’t know I had a cool streak down the middle of my head. I had a gift hiding for years, I rocked it out! I also took selfies non-stop and it helped others to feel more confident.
3 Years Later , In Remission
August 2016
I had to decide if was I going to live my life again even if I wasn’t going to look or feel the same. I took a bold step and faced the world.
Life in Remission 2020 😷
I was given a 2nd chance to be myself again. I wasn’t myself though, I’ll never be, that girl is gone. I did get my face back, sorta I have some laugh lines and damage due to medication and self-harm. The pain didn’t leave it changed. I spent the next few years trying to figure out the source of my pain. I got the run-around for a long time in the medical community, hearing things like, “ it’s cause you’re fat “ or “ it’s cause you’re Black” (a short way of saying genetics) I left doctors offices frustrated and in need of real answers. In 2020 I finally got some more answers, a rheumatologist diagnosed me with Fibromyalgia. It wasn’t all in my head! I hated being in pain all the time. The hospital was seeing my face more often than I would have liked but I needed to know what was happening to my body. When it comes to autoimmune conditions it seems like we trade one condition for another or live with several conditions, I was no exception. I never stopped advocating and I’m afraid many of you have or will have to continue to fight for answers like I have. 💜
Healing , I was tested for Psoriatic Arthritis and inflammatory disease, it was all clear I have been since diagnosed with Fibromyalgia as of 2020 and as Generalized Anxiety 💜 I went to therapy, I eat as clean as possible most of the week for my gut, I am as active as my body allows and experience mobility issues due to Fibromyalgia. At times I use a cane when the pain is intense or a wheelchair for traveling abroad. I joined a gym to keep my muscles strong. The Covid-19 pandemic came and due to lockdown restrictions I exercise at home. I want to stress that I was always active before this occurred, I firmly believe that my high stress rate and long-term emotional trauma contributed to the weakening of my immune system along with my genetic predisposition for Psoriasis, according to my doctor.
My hair still grows, very fast but I keep it short to prevent irritation and flare ups, plus it looks cute :) I’ve remained between 95-100% flare free, (remission) to date. My skin is still extremely sensitive so I no longer use dyes, hair products or conditioners. No advice needed though it’s working for me. I can use some makeup but I’m cautious with brands and ingredients, I celebrate with bright colours on my lips often. I mix my oils (coconut, almond ) and lotions (shea, cocoa butter) which are organic or with minimal additives.
I’ll never forget the suffering, mentally, emotionally and physically that I experienced during those years and I’ll never stop spreading Psoriasis and Mental Health awareness. Remember to be kind to those around you, those whose stories we may never know or understand.💕
May 2021 😷
*You are welcome to share my story link with anyone who may find it helpful in their time of struggle and to understand Psoriasis, Autoimmune conditions and the link between Mental Health. No part of this story may be used in any way without my expressed written permission.*
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