Conversations with… Samantha (Subject: Addison’s Disease)

Samantha is someone I met whilst training to be a primary school teacher a few years ago. We were both on the same course and both qualified at the same time, going on to teach in different cities in England. Samantha always seemed like one of those people who was destined to be a teacher – kind to the core, incredibly hardworking and someone who genuinely cared about the children in her care.

Over the years, we have loosely kept in touch through social media the way you do with people that you meet along the way, liking each other’s holiday photos and commenting on photos of great classroom displays. Recently, though, I noticed that Samantha was sharing things about her health, in particular about her diagnosis of Addison’s disease. I’ll admit that it wasn’t something I had ever heard of before, but Samantha talked about it so openly and honestly that I felt educated about it.

Samantha was diagnosed with Addison’s disease in November 2018 and is still adjusting to life with the condition. She still shares her usual photos of amazing looking meals, fabulous catch ups with friends and lots of positive posts about the job that she loves, but she also shares the days where she isn’t so good, where Addison’s disease does take its toll a little. In a world of people using their social media to promote diet drinks and using photoshopping apps to slim down their waistlines, it’s refreshing to see someone being… well, real.

Samantha shares her experience with Addison’s disease in this interview as transparently as she does on her own social media channels. For anyone with the disease, or any other chronic illness, I hope her words give you comfort and assure you that you are not alone in your battle. For anyone like me who knew little about the condition and how it effected people, I hope this interview leaves you a little more educated and a lot more in awe of the people who live with it daily.

Describe the moment you started realising that something was wrong with your health.

It was coming towards the end of the school year in July, it was boiling hot, the jobs list was endless and everyone was getting prepared for the summer holidays and the new school year. At this point, my periods suddenly stopped. I was waiting and waiting and nothing happened. The usual thought that I’m sure would enter most women’s mind was “oh god, am I pregnant?” Five tests later and I was still none the wiser but I was certain I wasn’t having a baby. A few weeks after that, I began feeling extremely thirsty, ALL of the time. I put it down to the hot weather, sweaty classroom and massive amounts to do and thought no more of it. When we finally broke up for the holidays, I began feeling dizzy, holding onto the walls for dear life dizzy. I couldn’t stand up for longer than 2 minutes without being out of breath and feeling the need to sit down. I then began throwing up on a morning (enter more pregnancy thoughts here) and I was extremely fatigued. This lasted for two full weeks. A trip to the doctor later and they said I had vertigo! I accepted this and went on my way and continued to suffer these symptoms on and off until November.

How did you eventually get diagnosed with Addison’s disease?

Throughout the following months, I continued to see my GP. My main concern was my none existent period, but little did I know that this was the least of my problems. People also started commenting that I looked like I’d been on holiday due to my skin changing colour. I was a nice shade of yellow for November and my knuckles and parts of my face were turning brown or ‘tanned’ too. It was funny because I didn’t even notice, but I felt like crap and very far from looking well so it was a confusing comment to hear from multiple people. A few blood tests later showed that my thyroid was now under active, which explained my hair loss, fatigue, vomiting, periods and then constipation (it was a lovely time). However, my GP then began getting suspicious when we noticed a huge weight loss of around 2 and half stone due to constant sickness, amongst all the other symptoms, so she decided to check my cortisol level the next morning through another blood test. On the day I had it done, I went into work and carried on with what I assumed would be an average day – feeling drained, sick and exhausted was now an almost normal way of feeling by this point. By 1pm my doctor rang and said “I think you need to go straight to A&E. I think you have Addison’s disease and you are at risk of going into a crisis.”
The rest of that day was a bit of a blur. I abandoned my class mid fruit tasting lesson, which I still feel guilty about because of the chaos – my TA was a superstar though. I spent the following 6 hours in the acute medical assessment ward, having bloods taken, steroids injected, bloods taken again plus an in-depth discussion of my full medical history.
Due to being dehydrated, this was the worst 6 hours of my life, my veins were extremely hard to find and I ended up with many failed attempts. In the end they abandoned some tests due to the stress I was under. I was asked to stay in over night, but due to living close by, I was thankfully allowed to go home. The next morning, we went back to the ward where they confirmed I had antibodies in my blood, my body’s natural steroids were extremely low (normal person has around 500nmol, mine was 56nmol) and that I had primary adrenal insufficiency aka PAI or Addison’s Disease; a rare autoimmune disease of the adrenal glands (things that sit on top of your kidneys). They’re responsible for controlling vital hormones in your body, blood pressure and your cortisol levels – your body’s natural response to stress or fight or flight situations.

It sounds like an absolute nightmare of a time, but thankfully at the end of it there came a clear diagnosis of what was wrong. What did you feel like when you were finally told that you had Addison’s disease?

It felt like a serious moment when the consultant came in and closed the curtain. We were sat down and he explained the results. Initially I felt shocked and a little confused – I didn’t even know what an adrenal gland was, never mind that they are essentially as important as your brain, heart, lungs in keeping you alive and well. After a while of explaining what my new life would entail, the reality began to sink in and I did cry. I think it was around the point of being told I would need to carry an injection with me to prevent a crisis, the need for a medical ID band and emergency information cards to be carried on me at all times that did it. It felt like huge changes and it was a LOT of information to take in all at once, but I couldn’t fault the consultant for his fantastic approach and how patient he was with me.
That night I remember going home with all my new tablets and injection kit and while watching tv, I experienced a panic attack. The steroids in my body were working intensely and a lot of things felt different. I felt out of control of my body and it was all a bit too much. Thankfully my boyfriend was by my side through the whole thing and calmed me down. However ultimately, I felt relieved to finally know what was wrong with me and that I was right to have stuck with my gut instincts and being persistent with my GP. I was very lucky to have it diagnosed relatively quickly and at a point where I hadn’t experience a full crisis, which could have been fatal.

It sounds to me like your outlook on your diagnosis from the beginning has been as positive as it can be, which I know at times can’t have been easy. How has Addison’s disease affected your daily life?

The saying is that people with Addison’s disease can carry on with their normal, daily lives with their steroid replacement therapy, however initially that wasn’t the case for me and for many others. My body was deprived of crucial hormones and things like my period had stopped as they were no longer necessary because I was so ill, so there was a lot of catching up for my body to do. The first few months were very up and down and I had two near crisis experiences in December. A few months on and as the steroids have had an impact and a lot of my hormones have now balanced out. I do feel some days back to my ‘normal self’ but how normal can you ever feel when you know that in the back of your mind, an accident, an illness or virus, a bereavement or physical or emotional stresses can cause you to be close to a stroke, heart attack or a coma?
I now carry an injection kit wherever I go and have multiple alarms to take my steroid medication three times a day, so there is always a constant reminder that things are not as they were but this routine has very much become engrained now and I’m sure there will come a time when it feels as natural as breathing air!

The demands of managing such a disease clearly have to be on your mind at all times, which can’t be easy. On top of that, you mange to be a successful teacher, a career that isn’t exactly known for being the easiest in the world! How do you manage to balance a full time job in a demanding profession with your illness?

Some people with Addison’s disease no longer feel like they can work. The unpredictable nature of it means that for some, every day is a challenge, so I am thankful that I can still continue to work in teaching for now and feel well supported. I have had to be sensible in finding a better work / life balance though and knowing when to stop for my own health, something that I know lots of teachers find difficult. I now tend to go into school earlier and leave earlier. I have had to learn the art of prioritising – what is absolutely necessary to do now and what can wait. I’ve always given my all to my job and will often spend hours of my own time working away on resources and lessons, but life still continues if you don’t laminate something and the children still learn just as well. It doesn’t make you a bad teacher. It has just been important to find that balance but it’s definitely something I’m continuing to work on!

Professionally you sound as though you have a really clear idea of how to look after yourself whilst maintaining career expectations, but I imagine there have been a lot of personal challenges that you have had to face because of your diagnosis. How do you keep on top of your mental wellbeing when faced with the challenges of balancing life with Addison’s disease?

This one has been tricky. My mental health initially was a little all over the place. I was very emotional in the first few months and while I wanted to talk to people about this new disease, I was conscious not to be a moaner and complain. I’ve learnt that not everybody actually wants to know how you truly are, as not everyone knows how to respond when you say “actually, things aren’t ok.” That has been difficult.
Addison’s disease isn’t something that will ever go away. My adrenal glands are 90% destroyed and there is no cure. The only option is to manage and substitute what is missing. So finding close friends that genuinely don’t mind the odd moan, or I feel completely comfortable sharing my true feelings with, have been key for my mental health. Thankfully I know who those people are! I also joined a local gym to use their swimming pool, which makes for a really nice change on days where I have the extra energy to do something like gentle exercise. It’s a great way to switch off from the world and just do something for yourself.

You have talked about the nature of Addison’s disease, but a lot of the symptoms of it are internal. Have you ever experienced any stigma or negativity because what you are diagnosed with cannot be ‘seen’?

Absolutely. There was a point before being diagnosed where there was a lot of frustration around me, me being one of them, but even from close friends and some family members. “How can you be so poorly? Why are you not going out? Why are you not having fun? Are you being sick or have you got an eating disorder?”
Cancelling plans and constant illness does eventually push people away, but there was nothing I could do. Some people even apologised to me after I was diagnosed and confessed they did think I was just being dramatic or over exaggerating – I suppose it is only natural. I still feel as though some people assume that now I am diagnosed, I must surely instantly be better and ‘cured’, but unfortunately that will never be the case, and that isn’t me being pessimistic. Yes, I am better than I was, but life is ultimately different. Some people will never understand, they may not want to either, but I’ve come to accept that that is ok and that you have to pick your battles.

One of the many things I admire about you is how you openly share the positives in your life but also that you don’t shy away from sharing times when you are struggling too. Why do you chose to share content this way?

I have always been very open on social media, as that is how I am in my every day life. I share whether people like it or not, and so sharing about Addison’s disease wasn’t ever really a question! Aside from that, it is nice to actually find others with similar autoimmune diseases and see how other people live. Only 1:100,000 people have Addison’s, so as a rare disease it can feel lonely but being open allows other people to find you and vice versa. It makes you feel like you’re not the only one and I think that is another reason why I share like I do.

It definitely is one of the biggest benefits to social media to be able to find likeminded people or people who are going through the same thing that you are. What advice would you give to someone who has just been diagnosed with the same condition as you have?

I would say take things very easy and steady in the first few months. Someone told me it would take 6 months for the steroids to really begin to work and I remember thinking that sounds like an awfully long time, but they weren’t wrong. Within 3 months I had slightly more energy, by 4 months my period returned, in 5 months my steroid induce gastritis had calmed down and 6 months on the majority of my days are spent doing ‘normal’ things and my day to day is more consistent. I’d also recommend joining support groups on Facebook and the Addison’s Disease page is full of extremely useful information. At a time when you feel like you’re completely alone in it all, they can be really helpful.

If you could sum up your outlook on life in one statement, what would it be?

I saw a quote the other day which made me laugh as much as it did hit home. “You’ll eventually reach a point in your life where you start to realise your own worth and you’ll find that you won’t take shit from anyone anymore because you’re strong enough to know that you straight-up deserve better.” Although it’s not exactly a poetic or a modest sum up, I think Addison’s disease has given me a lot of strength (in a roundabout way) in knowing who the wonderful people are in my life and who deserve my time and energy and those who don’t. The same can be said about work, friends and general life situations! I’m now all about using my time wisely and in ways that suits me. Life is absolutely for living and it’s too short to be spent in situations that don’t serve you, help you grow or make you happy. So realising that has been fantastic.

7 thoughts on “Conversations with… Samantha (Subject: Addison’s Disease)

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  1. my 11 year old daughter was diagnosed with type 1 diabetes and hashimoto disease at 6 and addisons last year life ust isnt fai sometimes very well written.

    1. I’m so sorry to hear that, sometimes it’s not at all. Hopefully interviews like this will raise awareness of it as it’s not a widely known condition as well as help your daughter see other people out there who have the condition too
      Thank you so much for reading and for your lovely words

  2. Does Samantha have a FB page where we can all talk about our Addisons and offer support and friendship to one another?

    1. Hi Michele -thank you for reading and for this comment. From what I know, Samantha is a member of different Addison’s online support groups. I will send her a message and ask if she is happy for me to provide you with a link to her personal page

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