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My Practical Self-Advocacy Tips for Chronic Illness Patients

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Self-advocacy has sent rumblings through the chronic illness community.

An online search will repetitively spit back phrases like “know your rights and responsibilities” and “make choices and decisions that improve your life and your care in the medical system.”

But what does that mean in practice? And shouldn’t we all be doing those things anyway?

I don’t think self-advocacy is anymore more skilful or cool than just taking control of your own life.

Chronically ill or not, we should all be making our own decisions – without being told what to do with our bodies.

Unfortunately, I feel it is the attitude that we are wrong about our wants and needs, or don’t know as much as our doctors about the symptoms and conditions that affect us, that makes self-advocacy more difficult (and therefore necessary) for us.

In reality – actually having firsthand experience probably means we have all become specialists in the conditions we have and are much more capable of advocating for ourselves. Thank you very much.

I mean, how many times have you met a health care professional that you’ve had to sit down and fill in about the form of chronic illness you are presenting them with and what it really feels like?

So why are people with chronic illness still being ignored, belittled and undermined and how can we take back the power to make our own decisions and stop being told what to do?

Know what you want.

Knowing what you want won’t mean it will be easy to go out and get it (sorry) – but it will ensure you’re moving in the right direction.

During the onset of my illness, I knew I wanted a doctor to not make a snap decision about me or my symptoms anymore. I wanted to be investigated and taken seriously.

When I was in the hospital, my partner brought a number of inspirational bloggers to my attention, and reinforced to me that I had the strength to live the life I wanted – which make me think about what I actually wanted!

And more recently I have been considering my wishes for the future and what I want out of my life, version 2.0.

I feel strongly that knowing what you want is the first step to getting there, like admitting you have a problem is the first step towards recovery!

It is the only thing that will help you know where you are going and what you are talking about.

Say no.

Just as important as knowing what you do want is knowing what you don’t want. This means understanding what you will not accept and showing other people that you will stand up for yourself and say no.

Whenever something is happening that you’re not happy with, you can say no. It’s not rude, you are in charge of your own body.

Sometimes saying no will be in your body’s defense, to give yourself a break. Sometimes it will be in defense of your emotions. And sometimes it will be putting the record straight and telling others “enough is enough” – when you have changed your mind, or don’t want to put up with something anymore.

If it is common practice for something that you aren’t happy with to happen, you can say no and change the way things are done.

When I was in the hospital, and my condition was still being investigated, a cardiologist told me that if I was found to have POTS (postural orthostatic tachycardia syndrome), I could take beta-blockers. It was the first treatment option that had been suggested and having seen how unwell I had become my parents saw this comment as a potential light at the end of the sewer.

I felt that these medications were available for tachycardia (one of POTS’ side effects) only. And it was my intention, right from the beginning, to see how far I could get without medication. So I said no thanks.

My past had informed me heavily in my decision. I was unhappy to experiment with any more medication after the horrific experiences I had had taking it throughout my life and it was more important that I was happy with my decision – as opposed to anyone else.

Having continued to say “no” to the things I don’t want, I have also gained a better idea about what I do want.

Tell them what you want.

Once you have processed how you feel about things and have established what it is you want: Start letting other people know about it!

You will usually need to have support from others to achieve your goals, so (much to my disgust) learning to ask for help is necessary too.

This isn’t to take away from you, it’s more to help find the people who will stand behind you, or alongside you. The final decisions should still be all yours.

When I was hustling for a diagnosis, I decided what I was going to do, as well as what I wanted from other people. I called upon my support system to get me to the doctor, sit in my corner for appointments and back me up when I was met with inadequate treatment.

I called on doctors to look into my symptoms further and persisted in voicing my wants and needs to everyone, even when it didn’t feel as though I was being heard.

Calmly explaining what you want and why, maybe the hardest part. I have saved many emotional outbursts for the bathroom.

Trying to behave as though I had everything together to everyone else, while I focused on my end goal.

Back to school.

Like a lot of people, I took to the internet when I first became unwell to do my research.

I had spent months being sat down and told what was wrong with me but no doctor had come up with any answers worth having. I wasn’t about to believe that I had an inner ear infection that had caused vertigo for 12 weeks, with no earache, as well as a virus that caused months of sickness and an anxiety disorder that had developed overnight for no distinguishable reason.

I had been told for years that symptoms like this were just anxiety. But I felt like I knew myself better than that. No amount of calm was going to fix me. It was ridiculous. And to try and prove it, I studied hard.

The information here, on the internet, is an invaluable resource and, for me, it meant I had a good idea what was going on with my body, before my doctors did.

Although overwhelming at times, research papers and medical sites – alongside people’s personal experiences held on forums, blogs and social media accounts – reduced my feelings of isolation around my chronic illness symptoms and subsequent diagnosis, as well as gifting me with the confidence to take control over how I was being treated and the knowledge to pursue the tests I felt I needed at the time.

Looking to educate myself, I also found an invisible army of people with chronic illnesses online: rising up with powerful empathy and heartfelt wishes of wellness, to share their experiences, provide knowledge around their specialties and build supportive communities.

I made it my business to answer my own questions: What are the possible causes, treatments, medications, lifestyle changes, outlooks…?

Doing your own research and finding out what is out there for you may sound irritating when you relay it to your GP, but individuals with chronic illness really do tend to know more about it than they do!

A few months ago, I received a letter from a cardiologist who had reviewed some of my test results. The letter stated that the results were “unremarkable” and that they would, therefore, be discharging me. But I knew this wasn’t right. Because I had done the research beforehand and I didn’t give up. The letter didn’t stop me in my tracks, it was just another knock that made me study harder and find another way in.

Even now I am still improving my knowledge: It is my newly acquired specialization that gives me ballsy confidence.

Rely on yourself.

Recently, my partner told me a story from when we were first dating. He said that he remembers me looking at him from a deflated position on the sofa and telling him “I’ve got this,” “I’m going to get myself diagnosed” and “Don’t you worry.” He said it was the moment for him. He trusted and believed me. Because I trusted and believed in myself.

My stubbornness had piped up, and I had began my mission to collate photographic evidence of every symptom I could, and request tests that would indicate or confirm a diagnosis.

That’s all I could do for myself at that time, so my goddess, was I going to do it.

There is no one who knows you better or who you should be able to depend on more to make the decisions that affect you.

While the people in your support system will be doing just that, supporting you, you are the one running the show.

No one is going to fight harder for you than you.

Even my partner, who helps me loads with the physical things, still can’t pull me through every second of the day and be responsible. That’s me. I’m doing that.

Sometimes the pressure of making these decisions and being responsible seems too much. I worry I haven’t always made the right decisions. I have worried that I wouldn’t receive the “right” treatment, or any at all. But I never worry I don’t have my best interests at heart. Because I do. And if anything does go wrong, then I know I can rely on myself to admit my mistakes and put it right for myself too.

Your body. Your choice.

Trust your body too. It is not betraying you, it is fighting for you. Listen to it and be gentle with it.

If your pain levels are screaming and your fatigue is unworkable – give yourself a break!

I contantly lose my temper with myself (it’s where I snap first) and am then forced to ask myself: How much am I expecting of my body? Am I giving it a chance?

On a bad day, I fight with my body. On a good day, I fight for my body.

With every decision I make – whether it’s what I eat and drink or what I stand for in terms of treatment – I understand that I am choosing to invest or start a spoonie overdraft.

Love yourself.

When I had the crash that landed me in bed with my chronic illness diagnoses, I realized for the first time – I really am fond of me.

I have spent years of my life harming myself in one way or another – disliking myself, and my body.

But when push came to shove, I cherished my body and fought to improve my life in every way I could – in the same way a dedicated partner or loving parent would.

I stood up for myself and requested new referrals when I didn’t feel like I was receiving the absolute best. And tried to arrange tests and appointments more quickly by paying for myself to go private.

I have sat in the emergency room and laid in the hospital, questioning how I had ever caused myself any harm and crying. I am truly sorry for myself, not just in pity but in promise, to always put myself first from now on.

I can trust, honor and respect myself, even if no one else does.

And I realize that one of the big pieces of ongoing work I can do to self-advocate is to continue improving the relationship I have with myself, and doing right by me.

The bottom line.

You are the expert in yourself. You’ve lived with yourself your entire life.

And, even if chronic illness is relatively new to you, you still have the experience of your condition(s) 24 hours a day, seven days a week. Your doctor may have trained for hours, weeks or months… but they probably are not going to catch you up now.

We also have the added benefit of being able to articulate what our conditions are really like to people who aren’t medically qualified.

I recently met a PhD student, who is studying POTS, and I was explaining to her what blood pooling feels like to me (by using some “out there” analogies). She had met specialists and read a lot of material on what was going on inside my body to attribute to my symptoms, but still said that I had told her more about what POTS was really like!

And because you know you and your symptoms well, you will also have empathy for others in similar positions that most people can not possess.

Having received mental health care, worked in holistic support and trained in counseling myself – I have always felt how incredibly important it is to focus on individuals and individual experience.

In mental health care and recovery, this is called Person Centred Therapy or a Person Centred Approach: an approach which focuses on acceptance (unconditional positive regard), congruence and empathy.

In physical health care, this doesn’t really exist.

And this is where I see the role of self-advocacy: stitching together the parts.

Because, by taking back the power to make your own decisions, you can pick and mix your own treatment plan, with you at its center.

You are the most qualified person to do it.

Follow this journey on Little Spoonie.

Originally published: March 28, 2018
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