Scared to Start…

I've been given the go-ahead to start my biologic medications. For those who may not know, biologic medications help reduce inflammation in the body. In my case, inflammation is caused by an autoimmune disease called Ankylosing Spondylitis, which primarily affects the spine and pelvis (among other areas), leading to pain, stiffness, and fusion of bones.

Biologic medications work by targeting specific areas of the immune system to make them less overactive. However, this dampening effect can make you less able to fight off germs, thereby increasing the risk of infections.

(You can read more about the different types of medications used to treat Ankylosing Spondylitis in my medications article linked below).

What happens next?

The way it works (at least here in my region of the UK) is that you get the medication sent to your home via a company called Healthnet Homecare. You then schedule an appointment for a nurse to come to your home when you want to start the first injection. They show you how to use it, explain the medication and its possible side effects, and watch for any adverse reactions that may occur.

After that, you are free to continue taking the medication by yourself. For me, that means an injection every two weeks. You also have regular blood tests that you either arrange with your rheumatology team at the hospital or your local GP practice. These tests monitor things like your inflammation levels, how well the medication may be working for you, and any possible side effects.

I then have regular telephone appointments scheduled with my rheumatology nurse to check how things are going.

My GP has also been updated and is aware that I will be starting this medication shortly. They have notified me that they have a special note on my records, which alerts all doctors and staff of my medication and immunocompromised status. This means if I call for an appointment regarding a possible infection, I essentially go to the top of the list as antibiotics may need to be administered quickly.

Now, all of this seems very well thought out and organised. I’ve been aware of this day coming for almost two years now, and I’ve had the medication waiting in my fridge, ready to go, for the past year while I waited for other appointments and tests my rheumatology team wanted before I could begin.

I’ve read countless research articles and anecdotes from others who are taking them. I’ve read what can happen if you don’t take them (essentially all the symptoms of AS continue to cause inflammation and possible damage to your body…).

So why is it, now that I’ve come to the point of being able to take the medication and book that initial appointment, I feel hesitant to start?

So why am I still procrastinating?

My first concern is…

There’s a part of me that says ‘Is it a good idea to start a medication that can compromise my immune system during, what seems to be, a quadruple threat of viruses going around at the moment (norovirus, covid, another respiratory virus and also flu). My local hospital is issuing red alerts saying that their A&E departments are on the brink of collapse….my local GP office is sending out warnings on their Facebook page to only call if absolutely necessary….and there are more and more delays in people being seen and getting their medications.

Second concern…

There is also a part of me that is terrified to start the new medication because one of the side effects (for some people) can be increased fatigue.

I’ve worked so hard over this past year to get my energy levels up. They are nowhere near what would be considered ‘normal’ for someone my age, but I can see the huge steps forward I have made in recent months. I’ve changed my diet, gone to therapy, moved my body more, and exercised sustainably. I’ve set boundaries and prioritised rest and recovery. Now, I have the energy to write, be creative, and be more social.

I’m worried that taking this medication might mean I actually take a few (giant) steps back. What if I go back to those days of being so fatigued that sitting up in bed made me breathless? Or back to the days I was so fatigued I got out of breath eating soup and couldn’t chew solid food? I worry that I’m not mentally strong enough to deal with such a setback. I’ve finally found a routine that I’m happy with. Am I rocking the boat needlessly by starting this medication right now?

Third concern…

Another side effect is being immunocompromised and at increased risk of infections. This will mean putting even stricter boundaries in place to protect myself. It’s been hard enough to protect my own energy levels, so what if asking the people around me to help protect my immune system becomes too much for some? It might mean seeing friends and family less, especially around winter when flu season is rampant, to keep myself safe. It may require having uncomfortable conversations and asking them to wear a mask or washing their hands before coming into my house. Will that make me even more isolated than I am now? It feels like a constant test of people's love—their willingness to put measures in place to see me. With time pressures, distance, and the stresses of modern life already getting in the way, will this be one step too far? Do I have the strength to maintain my boundaries and sometimes say 'No'?

Yes there is a fourth, sorry…

Will the doctors even listen to my concerns about possible infections or side effects that may occur? I’ve been gaslit many times in the past, my concerns dismissed and overlooked for years. Why would now be any different? What if they don’t listen to me again? Am I strong enough to keep fighting to be heard?

Fifth and final concern (I promise)…

But then there is also another voice that’s calling out to me. It says, "Amanda, what if you take the medication and you feel tons better? You have read countless stories of people who have taken the medication and feel amazing! What if your pain reduces, your stiffness lessens, and you get more energy? What then!?"

And you want to know the really weird thing? That outcome actually scares me the most. For two reasons…

Firstly, I’m scared of it going so well that I get used to feeling amazing, but then one day the medication may stop being so effective (this happens quite often with biologics and people need to change medications multiple times). It would be like dangling the carrot and then it being whipped away again. Am I strong enough for that outcome? Treading on eggshells, rebuilding my life, for it to then be taken away again…

But the second reason, and the one that scares me the most, is, “What if this medication works and makes me feel a lot better and then my life can go back to normal?”

That word "normal" starts throbbing in my mind in neon red letters… My nervous system sees this word as a threat, and I start to feel panicky.

What is normal?

What was my life like before my ankylosing spondylitis diagnosis? Do I really want to go backwards?

Do I want to return to a career in nursing and healthcare, which was so full of stress, burnout, and bullying? Where I had no boundaries, was a people pleaser putting everyone else’s needs above my own, working overtime with a high workload to low pay ratio, depressed, anxious, with no desire or will in my body to create or do any hobbies other than sleep, eat, and repeat.

I was pushing myself to the brink of complete burnout and collapse, to the point where my faulty genes got turned on and an autoimmune disease was triggered. My body had to scream in pain for me to listen to it and to finally slow down.

Is that really the ‘normal’ life I want to go back to?

These last few years have been hard, but being ill has woken me up to the fact that the life I was living before was far from being normal.

I don’t want to go back to that old way of life, the one so glorified in today's modern society. The one of toxic busyness and stress, worn as a disturbing badge of honour.

“No, I’m more tired than you. NO, I AM,” we shout at each other, because that shows how important and needed we are!

Society shouts, “We have to put career, status, and money above all else to show our social rank! Look at me, I work 50+ hours a week. I earn £++++, that means I’m winning at life!!”

But does it? Does it really, if it means sacrificing our mental and physical health in the process?

Before I started to get sick, I got my first-class degree at university, worked as a nurse, had a nice car, and a nice flat, and could buy nice ‘stuff.’ On the outside, I looked like a success! My family was proud of me; I was living the dream. My dad couldn’t wait to tell everyone how proud he was that his daughter had become a nurse.

But on the inside, I was miserable. I didn’t feel successful at life, even though I did everything that society told me to do. I didn’t even go to my own graduation. I felt like a fraud. I was depressed and anxious, and felt on the verge of panic attacks every night. I threw up by the side of the road on my way to work most mornings, terrified of the stress that lay ahead as a community nurse. My boss would guilt trip me down the phone, “But you have capacity,” he would say, adding more patients to my already overflowing list. Even when I told them it wasn’t safe to see that many patients in one day, “I can’t give the quality of care that I want, that I need to,” I pleaded, to no avail.

All that time, my body was screaming at me, “I don’t have the fucking capacity. This is all too much.”

My IBS was out of control, and I would go to the toilet 10+ times before even stepping out the door. I was pale and losing weight rapidly, my blood tests showed I had multiple nutrition deficiencies, but people kept telling me, “Oh, you look so good in your uniform,” “How do you stay so slim?”

It’s called the stress diet Karen… haven’t you tried it??

I tried to reach out for help. I knew I was drowning, so I went to the GPs for help with my anxiety, and they said, “What do you want me to do about it?”.

It took so much courage to admit I was struggling that day, and they threw it back in my face. I cried; they stared coldly at me, gave me pills, and I was on my way again, back to the chaos of modern life. It was as if they were saying ‘I’m fucking miserable too, that's just part of the job, part of life, part of what it means to live in modern society’, like it was all so NORMAL.

After my diagnosis, I swore to myself that I would never go back to that old way of life.

I now know I deserve more than that. I deserve a chance to be happy and healthy, not just living at full stress capacity, white-knuckling it while life zooms by in a mad anxiety-induced rush.

But I’m worried that taking this medication will make others think all is well, when I still have a lot to deal with. I worry that external pressures and society’s weird cultural norms will rise again. Questions will appear out of nowhere like a sniper, questions like…

“When are you going back to work?” “Now you’re feeling better, can you do XYZ for me?” “Shouldn’t you be able to do XYZ? You’re all better now, right? Because you’re on the medication?” Bang Bang Bang in rapid fire.

Will I be strong enough to keep those boundaries I have fought so hard for in recent months? Will I be strong enough to resist guilt trips and my own inner critic telling me I need to be more productive to be worthy of everyone else’s definition of success? Be busier, be more stressed, JUST BE MORE!! Will I rush back into a ‘productive’ life before I’m ready and take a million steps back again?

I hope I’ll be strong enough to resist.

Whoa, put on the breaks there Amanda, you’re spiralling!

In recent weeks, I could feel my anxiety starting to gear up again. I felt the old familiar patterns of my monkey mind starting to spiral out of control: my chest tightening, heart palpitations thumping away, thought after worried thought whizzing in quick succession. What if this, what if that…

My whoop watch (which monitors my energy levels via HRV, Heart/respiratory rate, sleep etc) was already warning me with red alerts, that I was due for a crash in my health any day now.

So that’s when I had to tell myself, "Whoa, put on the brakes, Amanda. Take a breath. Slow down."

I then reminded myself of the many lessons I have learned over the past two-plus years.

I told myself the following things, which have gotten me through some very tough times:

• Take each day as it comes. Just put one foot in front of the other…

• Listen to your body; it holds a lot of wisdom…

• Who cares what everyone else is doing? What’s best for you right now?

• Stay true to your boundaries…

• Take things slow, rest when needed, without guilt…

• You don’t have to have everything figured out right away…

• Ask for help when needed; there is no shame in it…

• Stand up for what you feel is right…

• The people that really care will understand…

• You always have the choice to say no or to change your mind…

• And the most important one of all…

  You are stronger than you think! You can get through this.

And just like that, when you need a sign from the universe, during writing this article, I had a call back from the Healthnet Homecare team to arrange my appointment.

So, I have decided to start my medication this Tuesday! I’ve decided it’s at least worth a try for a better life. Wish me luck!

So you see, taking a new medication for an illness may seem straightforward enough. You take it and feel better, right? But it’s just not that simple.

As you can see from the above, there are a million questions and genuine fears that can arise, and many patients don’t have the support in place for these questions to be answered fully. Many aren’t reassured; they are just told “take this” while they are ushering in the next patient.

A lot of the time, we know it needs to be done, we know we need to take a certain medication, but it doesn’t stop it from being scary. It doesn’t stop it from having quite harsh side effects on our bodies. While these may be less severe than the symptoms of the disease at times, they still warrant concern and shouldn’t be dismissed.

People should not be made to feel ashamed for taking medications. It’s not a weakness, it’s not giving up or failing at life if we need a helping hand with medications.

But people should not be shamed for deciding not to take them either. It doesn’t mean they don’t want to get better, or they deserve ‘what’s coming for them,’ or they are being difficult or non-compliant.

We each have our different reasonings. We each have a personal choice to make. We don’t need constant judgment or unsolicited advice.

If you want to offer anything, offer your kindness, understanding, and empathy.

Or a simple ‘I’ll be right here with you, whenever you decide to start…'‘.

How about you?

Those of you on biologic medication- do you have any tips for a newbie? Do you have many side effects and how do you try and reduce these? Do you inject into your belly or your thigh and why? Have people shamed you in the past for taking medication? or for not taking it? Has the medication improved your quality of life or reduced the progression of your disease? Was it scary that first time that you took it? Or perhaps you are about to start a new medication too- how are you feeling about that? What kind of factors have you had to weigh up in your mind? How do you protect your immune system?

I would love to know in the comments below!

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See you next week!

Lots of Love,

Amanda x