Your chronic condition's anniversary

So, it’s your chronic condition’s anniversary. Or that of a loved one. It’s the day your life changed. Irrevocably. Forever with a big F. This was the day you first started feeling strange symptoms, or you took yourself to A&E or were rushed there, or you got a diagnosis, or you had a big operation.

An anniversary is typically a day to celebrate

For many people, the word ‘celebrate’ conjures an image of happiness and festivity, like one of the pictures above. But let’s look at the definition. According to the Free Dictionary (1), ‘celebrate’ is defined as:

to observe (a day or event) with ceremonies of respect, festivity or rejoicing
to perform (a ceremony), to extol or praise, to make widely known
to observe an occasion with appropriate ceremony or respect

You can see that ‘celebrate’ also has the meanings of ceremony and respect. In addition, whether we view this anniversary with happiness, sadness, anger, loss, gratefulness, or something else, we are remembering. And this is what I am getting at.

To celebrate is to remember with respect

Every year this day comes around and you remember, and your memories may invoke a range of feelings, some which others may not understand. Whatever you feel is your current experience. If you are feeling the way you do, I bet others are feeling that too even if their condition/illness is different. You are not alone.

So in this post, I’m not saying you celebrate what happened to you in a ‘Yay! I’m so pleased this happened to me!’ I’m not talking about that kind of celebration. Instead, I want to put forward a way of remembering your chronic condition’s anniversary that encourages acknowledgment of and respect for everything you are feeling about this day. Why?

Whether we are feeling completely down on this day or not, I believe we can learn something beneficial from our experience of remembering. Also, remembering in this way helps us to make sense of our experiences, integrate them into our sense of self, which is a psychologically healthy thing to do, and learn from them.

A way to remember your chronic condition’s anniversary

Here is a set of remembering questions you can take yourself through at your own pace. I’ll be taking this remembering journey with you using my own experience from over the years as examples.

Firstly, get comfortable. If writing or typing out what you are thinking and feeling helps you, set yourself up to do that.

Describe your experience

What happened to you on the actual day? What did you say and do? How did others respond? What did they say and do? Since then, what has life been like for you? Note the good, the bad and the in-between.

As much as possible, keep your description factual, i.e. I felt this, I did X then Y, S/he said this and did that, I responded by doing and saying, At the time I thought and felt X.

You are describing your experience in behavioural terms, what someone could see you do and hear you say.

This week is an anniversary for me. 6 years ago my journey with Transverse Myelitis (2) began. I remember when I came home from hospital and got the name of the illness in a letter the neurologist sent to my GP. The neurologist hadn’t told me the condition’s name in hospital, only that I had inflammation of the spinal cord. I googled ‘myelitis’ and felt scared with what I read. I remember shaking with anxiety. I did not sleep well for a month.
I started doing genealogy research because it was something I had been wanting to do and now had the time, and it was something I could do while sitting.
Family wanted to go for a 3 mile walk and said I could do it. I doubted I could, but kept silent. That walk was so knackering I slept for the rest of the day and that night.
As time passed and I could physically do more, I started swimming again. The water on my skin hurt. (If you have nerve damage, hot and cold water can physically hurt.) I pushed myself to swim for 25 minutes. I went home and was so knackered I had to sleep.

What do you think and feel about your experience?

What are your thoughts and feelings about your experience? What do you think and feel about what you said and did? And others?

I think the medical professionals could have given me the name of the illness while I was in hospital so they could answer my questions and help me put my experience into context. I felt angry about this for some years.
I felt happy when I did the genealogy research.

Note the things you thought you did well. What enabled you to do that? This is a really important question as it points to your strengths. If you know what your strengths are, then you can use them again and again.

My fear of not recovering well and my desire to do so pushed me to do things like swimming. A good kind of stubborness, willingness to work, and enjoyment of swimming helped.

What did you not do so well at? Another important question. This helps you learn what you may want to do differently going forward, get help with, or find a way to manage.

Why wasn’t I more insistent with my family that I just didn’t feel up for such a long walk? I needed to be but wasn’t.

What assumptions underpin your thoughts and feelings?

Now take a step back, ask yourself this question and pause: What assumptions underpin my thoughts and feelings? (about yourself and others)

Keep in mind some of your assumptions about yourself and others may not be true or helpful. They may require you to check them out with others and adapt what you are doing. And other assumptions will be true and very helpful.

Assumptions about others

Medical professionals can be good at treating you, but not necessarily communicating with you. This is definitely true for some, but not all medical professionals.
Other people should know what is going on with me, how I’m feeling and what I can do. – Should they? These people don’t live in my body so they don’t have the same experience as me. This assumption could get me into trouble if I keep operating on it.

Assumptions about me

I have to say yes to other people even when I don’t want to. – Do I? Why? If I keep doing this, I won’t be able to get my needs met.
I am capable of doing things I still enjoy, like swimming, just not for as long. Yeah!

What meaning and learning are you making?

What meaning are you making of all of this? What are you learning about yourself? And about others?

I need to ask the medical professionals a whole lot more questions at appointments.
Having a project like the genealogy research occupied my mind, provided a distraction from the pain, and enabled me to accomplish something I felt good about and valued. Having a project one values in the recovery phase of a serious illness can do wonders for one’s confidence and self-esteem.
I had a tendency to say yes to others to please them. That was something I had to start changing so that I could look after my needs and appropriately self-care.
Other people don’t live in my body so won’t know about how my condition affects me. I have to educate others about my condition so they knew what is reasonable to expect of me.
Pushing myself physically by swimming (and even doing that walk), allowed me to remind my body what it could do and also test its limits. Bit by bit I could do more.

What will you do next time it’s your chronic condition’s anniversary?

Our meaning and learning grows and changes when we get a chance to use it. So next time you are faced with a similar situation, what will you do? Will you have a different aim? What do you want to think and feel differently about yourself or another person?

Have my questions prepared for medical appointments. Have a standard list of questions in case something unexpectedly happens at a medical appointment, like learning something new about what is going on in my body.
Have projects lined up which I would enjoy doing.
People are generally happy to learn something new in order to help you.
It’s ok to test my body’s limits. And plan for a rest period afterwards.
Exercise is important in the recovery process. And recovery is a life-long process.

And when you have that experience next time, reflect on what you’ve done differently and how that went.

Where are you now regarding your chronic condition’s anniversary?

Whew! That has been one remembering journey! I think we all need a rest now! On a serious note, these questions help you acknowledge all the facets of your experiences with respect. By doing that, you learn what you can do going forwards. And that learning and adapting is vital for living well with a long-term chronic condition or serious illness.

And where am I? I went on a kayak trip this past weekend and kayaked 8+ miles. It did mean I slept for 14 hours afterwards as my body was knackered. But I am happy to have found a physical activity which is good for my health and I can share it with others. So this week I celebrated by remembering and buying my very own kayak.

My way of practicing mindfulness

Over to you

How do you mark your chronic condition’s anniversary? What do you do that helps you? Share by leaving a comment. And if you tried the approach outlined here or have questions, share them too.

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1 Definition of ‘celebrate’ available at https://www.thefreedictionary.com/celebrate

2 Transverse Myelitis is a rare neurological auto-immune disorder of the central nervous system. It involves inflammation of the myelin sheath, which surrounds the spinal cord. Myelin is a protective insulating layer surrounding the nerves and it acts as a highway on which messages travel between the brain and body. When myelin is damaged, these messages are travelling on a damaged road and there may be obstacles so they can’t get through. This can result in muscle weakness, paralysis, parasthesias or un-comfortable nerve sensations, neuropathic pain, spasticity, fatigue, depression and/or bladder, bowel and sexual dysfunction. To learn more, go to www.myelitis.org.uk and www.meylitis.org.

Your chronic condition’s anniversary – Time to celebrate