How long have you been unwell? How long until you made progress?
These are understandable questions. Especially when your symptoms are new or you’ve only recently been diagnosed.

It can feel like you’ve entered an abyss. Life seems gloomy. You’re living with a barrage of symptoms. You’re unsure of your baseline. PEM is an uninvited BFF and what were once everyday tasks now feel gargantuan.

My answer to those questions isn’t concise or straightforward. Hindsight is a wonderful thing. If I knew at the beginning of my ill health what I know now, I think my story could have been quite different.

We can’t live in the past though. You have to allow yourself the grace to remember that you did your best with the knowledge and support you had at the time.

At the end of this year, it’ll be nine years since I developed what I later found out was Glandular Fever. I wasn’t diagnosed until the following year and because of this I’d already made mistakes in how I was managing the illness.

I was later praised after my ME diagnosis for how well I was coping. However, what that actually looked like was no work/life balance, huge crashes every weekend and during school holidays. This wasn’t good management. My productivity was put on a pedestal when what I really needed was someone to tell me I was doing myself harm and that this would only get worse if I didn’t make changes.

During a long period of sick leave, I started preparing to return to work. It was early in the pandemic so there were no face-to-face meetings. I became the facilitator of my own return. I had to communicate with everyone involved in my case individually. There were a lot of people! I took their input and pieced it all together so things could move forward over a period of five months. Bear in mind though, I was of course still unwell throughout. Chronic illness doesn’t suddenly disappear fully even if you’ve seen an improvement.

By the time I returned to work in person, I’d effectively been doing the job of many other people. My phased return hours were then increased in the first week against what was stated on my Fit Note. The result was further significant decline.

I was cross that all the progress I had made during my sick leave had been undone in an incredibly short amount of time. I have a better understanding of boundaries now and more confidence in advocating for my needs. With foresight and broader thinking I do believe a return to work in teaching was possible - just not in the way it happened for me.

Maternity leave and returns to work, for example, are often handled in a much more employee-friendly way. I look forward to the day when illness/disability understanding and support are met with the same level of care.

The Equality Act is there to offer protection but in my experience it didn't feel much support and left me, the employee, trying to navigate aspects such as reasonable adjustments or Access to Work (long waiting list there btw so I had nothing prior to my return). When you’ve already had periods of sick leave, rocking the boat isn’t your top priority. You aim to keep the peace. You try to people please. However, a sick person should not be a performing puppet, neglecting their own needs just to appear cooperative.

As I learnt, you are soon replaced. Your former workplace carries on without you, business as usual, while your own life stumbles and crashes.

Everyone’s journey with chronic illness is different. My story isn’t your story. Progress I’ve made has sometimes been undone and it certainly isn’t linear.

I’ve learned that progress doesn’t come from trying harder. It comes from slowing down. From understanding what real pacing means. From respecting my body’s signals before I reach a crash.

True rest isn’t just lying on the sofa once symptoms spike. It’s building a life that works around what supports you rather than what drains you.

I’m not one for fluff or bold claims. There are no quick fixes in my opinion. If someone promises you healing or recovery, keep your wits about you. It’s easy to fall for bold claims when you’re desperate to feel better.

I don’t say this because of poor mindset or lack of hope. I say it because I care. I believe many people in the mild and moderate categories can make progress. What that looks like will be different for each person.

Progress can happen. I do believe that. For many it takes a long time and there will be some people who feel they only decline. Everyone is different. Progress doesn't occur from forcing ourselves into someone else’s timeline or beating ourselves up because someone else's baseline enables them to do more.

If, and when, you are fortunate enough to experience improvement, cherish and nurture it. I’m not someone who subscribes to the notion of ME recovery. I realise there are some lucky people who have more or less returned to their baseline from before developing the illness but I think the reasons why this happens are often varied, multifaceted and nuanced. I consider it more helpful to think of the condition as in remission and believe thought should always be given to not asking too much of or pushing your body too hard as the threat of relapse will always linger. Respecting your body and lifestyle choices hold such importance if you’re fortunate enough to gain relief, improvement and remission.

Those “how long” questions don’t have one answer because no two journeys look the same. Don’t compare yourself to someone else’s pace. Instead give yourself patience and compassion to follow your own. Progress isn’t linear. It may be slow or fragile but it still matters. Life after illness will look different and so will you. Trust the process, tune in intently to your body and shape a life that supports who you are now.

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The content in my blog posts is provided for your general information purposes only, that maybe of interest to you. Please remember it has not been created with your specific circumstances in mind and therefore should not be relied on as medical advice or any other type of advice.