5 Things Every Autoimmune Patient Wants You to Know

autoimmune patient

As an autoimmune patient, having healed myself naturally from the devastation of being consumed by an autoimmune digestive disease (Ulcerative Colitis), not only do I have great empathy, but I have a knowing and a deep understanding of the many wants, hopes and fears that consume patients daily. The dark soul-shattering relapses prompt us to cling to each day while our time flies by and uncertainty lingers in our shadow.

Haunting questions torment us daily:

  • How long is this pain going to last?

  • Will I ever recover completely?

  • What will this mean for my career, family or children?

autoimmune patientAccording to the American Autoimmune Related Diseases Association, currently 50 million Americans suffer from an autoimmune disease; that’s 20% of the population – or 1 in 5 people.

There are over 80 different types of autoimmune disease, some of which many doctors don’t even have a name for, let alone know how to diagnose. Autoimmune disease causes a person’s body to fight itself: it causes your immune system to react to your own cells the way it reacts to an allergen. But it’s more than this. And, as part of creating a better understanding and awareness of what this minority, yet growing epidemic is going through, I feel it is time to grasp a deeper understanding of what an autoimmune patient feels on a day to day basis.

My personal experience tells me the following.

A ‘good’ day is a day you can function

These days, being able to function for more than two hours a day is a dream. I think most people don’t know the true definition of a ‘functioning body’. By ‘functioning’, I mean being able to wake up feeling refreshed, and eating without constantly throwing up. I mean enjoying the experience of being physically and mentally strong, exercising, not having constant spiking temperatures, and having 2-3 miraculous bowel movements a day instead of 12. That’s what we all want, right?

Just because we are working or at school, doesn’t mean we are okay

My school days were plagued by the distress of arriving two hours late, not because I wanted to or was trying to ‘ditch’ class. I just physically couldn’t get to school at the expected 8:00 am start time. I needed to factor in two hours of toilet time before leaving the house. I became accustomed and desensitised to the judgements from peers and teachers who concluded I was being lazy and trying to get out of school work. Realistically, with my body in the state it was, it was impossible for me to meet the expectations of the school timetable. After missing the year before my final exams and having many ‘dropping out of school conversations’, I completed my final year 12, with the mindset of refusing to let the ulcerative colitis beat me by forcing me to quit school. The trickiest thing about autoimmune disease is that it can be easily invisible or hidden to many people who don’t know you. ‘You just look normal’ is what other students used to say to me, ‘There is nothing wrong with you, you’re at school’. Realistically, one glimpse of the outside won’t give you the complete story.

The medication can be as severe as the disorder itself

Being sixteen and waking up with the most intense stiffness and arthritis throughout your entire body is never a good sign, let alone not being able to move without the assistance of another fully-grown adult. Enter steroids (cortisone): the number 1 drug for masking inflammation. It saved me at times but
ruined me simultaneously. My bone mass depleted, my weight sky-rocketed, my growth was stunted, my skin dried up like the Sahara Desert and my joints ached 24/7. And none of these side-effects helped heal me or get to the cause; they just contributed to the downward spiral I was already on. The cons of steroids were beating the pros, which was for the intestinal bleeding to stop. This was achieved, but that achievement came with the above trade-offs. So, it turns out that the medications that an autoimmune patient has to face can be as bad as the disorder. How ironic.

autoimmune patient

 

Treatment can damage looks and self-esteem

We have all heard the expression ‘there is a trade-off for everything’; you know: ‘one for one’. This is the world of symptoms in autoimmune disease. In the midst of my relapses, the choices were limited; trading intestinal bleeding for muscle aches, puffiness and ‘quick’ weight gain from the side-effect of steroids was devastating. My heart would sink when people would comment on my mysterious fluctuating weight. Six years ago, self-love was unheard of; it did not exist in my vocabulary. My mental landscape reflected the barren landscape of my intestinal tract: constantly being stripped of all microbes as a result of my diet, a cocktail of prescription drugs, stress from school and a deep dark, fearful depression. Questioning my path at times of low self-esteem became a commonplace. Was all this pain and suffering worth it? Mind you, there were only ever thoughts and never any actions. I know I am speaking to so many autoimmune patients who feel the same, but who nevertheless feel very much alone. So, my intention was and still is to not only create awareness, but to create a community that can unite and rise above the fear of having to live with a digestive autoimmune disease. I believe I have proven the possibility exists.   

Integrity – we have to cancel plans so much

It is exceptionally hard to plan your life not knowing how in the world you will feel when you wake up the next morning or the following week. Looking back, I would describe autoimmune disease as a big waiting game; everyday is a new dawning of painful possibilities. It may sound dramatic, but this is the reality of relapses; making plans around this can be challenging and sometimes impossible. Suddenly the freedom of going anywhere or doing anything is morphed into a set of specific criteria defining how you can actually go about leaving the house. Factoring in the car trip, closest toilet, eating and timing must not be winged; instead it must be planned as a slick operation without any slip ups.

Six years on from these dark days, I can say my days are a lot different. My freedom of leaving the house and going anywhere has returned. As a result of my lifestyle change, my gut microbiota is buzzing and no longer being stripped. The fear of ‘what’s next’ no longer haunts me. My mental landscape is no longer parched and dying of thirst, but now hydrated and flourishing with positive thoughts, stable moods and a deep sense of calmness and fulfilment. The fear of uncertainty is no longer my ruler, and I believe this is the biggest hurdle many of us autoimmune patients face, but it can be overcome.

Can you relate to any of these experiences? Perhaps you know someone who could benefit from hearing what an autoimmune patient is actually going through. I would love to hear your thoughts, so like, share and post in the comments section below.

Peace, Love, Health

Sammi x

SOURCES:

http://www.aarda.org/autoimmune-information/questions-and-answers/

For more about how to deal with autoimmune disease, check out Super Gut.



DISCLAIMER: The information included on this page is for educational purposes only, and is based on the author’s own personal journey and experiences. It is not intended, or implied, to diagnose, treat, cure or prevent disease or illness. This information is not a substitute for professional medical advice. The reader should always consult his or her healthcare provider to determine the appropriateness of the information for their own situation, or if they have any questions regarding a medical condition or treatment plan. Reading the information in this blog or website does not create a physician-patient relationship.

GAPS™ AND GUT AND PSYCHOLOGY SYNDROME™ ARE THE TRADEMARK AND COPYRIGHT OF DR. NATASHA CAMPBELL-MCBRIDE. THE RIGHT OF DR. NATASHA CAMPBELL-MCBRIDE TO BE IDENTIFIED AS THE AUTHOR OF THIS WORK HAS BEEN ASSERTED BY HER IN ACCORDANCE WITH THE COPYRIGHT, PATENT AND DESIGNS ACT 1988 OR ANY OTHER LAW.

2 Responses to 5 Things Every Autoimmune Patient Wants You to Know

  1. Hi Sam,

    Thanks for sharing your experiences with us. I have found out I have endometrioses a couple years ago and can relate to most of what you have described above. The side effects of my treatments have been very harsh on my self esteem, my mood and even my mental health. I have been doing a lot of research on health eating and found out many people were able to deal with this condition only by following a strict diet. I wanted to ask you how you took this decision and if you were not afraid of dropping off all your medication. How was this process for you?

    Thank you!
    Samantha

    • Hi Sam,

      Great question! I can definitely relate to self-esteem, anxiety and mindset upset as a side effect from dealing with any chronic condition. I will say honestly that I had got to a point in my very young life (18) where I was just fed up with being sick. I had been suffering since age 10 and was relentless about finding a way to go into my 20’s with a healthy disease free body. At first (like anything) changing what I ate, my mindset and my routine around what I ate was tough. I stopped viewing the way I ate as being ‘strict’ and had to go on a bit of a journey with that including changing my values around what is important to me and the way I want to live my life. In essence, it was big personal development. And now I understand that you can use your illness as a portal for greater understanding about your true self. It took me two years to come off all my medications and I had to really bust through the ‘fear’ of the uncertainty while doing this. I talk about this more in an up and coming blog post so stay tuned. Peace, Love, Health – Sammi x

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