Back in 2012 I was diagnosed with mixed connective tissue disease, an overlap of lupus SLE, polymyositis and scleroderma. The diagnosis came with a huge sense of relief.

Like the majority of sufferers with invisible illness, I was diagnosed as a young women. I’d had symptoms for almost a decade, but like so many others, I was written off as being hormonal, anxious, depressed or a hypochondriac (or all of the above). So when a doctor takes us seriously and finds a cause for all these symptoms (in my case almost a decade’s worth), it feels fantastic.

Suddenly all these symptoms had a cause. I had something to fight against. There was medication I could take to make me feel better.

But in the 7 years since then, there have been times when I wish I’d been told more, or offered more, back when I got that first diagnosis. Here are some of them…

We’d love to hear what you wish you’d known when you were first diagnosed? Tell us over on Instagram or Facebook, or leave a comment here!

 

You are about to embark on a tough emotional journey and there are people out there who understand and can help

The sense of relief that comes from getting a diagnosis is entirely understandable. But I wish I’d been told that about what comes next. Looking back I can see I went through a long period of adjustment that felt very lonely. I went through a grieving process for the job I’d lost and the potential longer-term loss of my career. I felt huge anxiety about the uncertainty of the future, particularly in regards to not knowing if or when I’d next have a flare. The idea of taking tablets every day for the rest of my life felt depressing. The side effects of the medication were daunting.

At the time I didn’t know there was a community of chronically ill people out there who could have supported me. Even if they didn’t have the same illness as me, they would have understood the sadness, anger, fear and loneliness of facing chronic illness as a person of working age. They would have been there – as they are there now – with advice, support, friendship and love at a time when others around don’t understand. If you are newly diagnosed, seek them out. Facebook is a great place to start.

 

You may develop other conditions

I spent the first 5 years after diagnosis getting over the fear of a flare. Initially I was almost paralysed by the fear that making plans or committing to something would lead to disappointment or heartbreak all over again if a flare got in the way. But I had found ways to keep my illness under control, and I started to think about where I might like to go with my life in the future. What I hadn’t been told was that autoimmune patients often develop more than one condition.

Just as I started to feel stable enough to move forwards, I developed a new condition, then another, then a worsening of another underlying condition. Suddenly I was plunged back into trying to figure out what was wrong with me, and all the pain, worry, tests and specialist appointments that process brings with it.

I wish I’d been told to potentially expect other conditions to develop so that I could have processed and accepted that, rather than feeling like I’d taken a huge step backwards. It would have saved me a great deal of emotional pain.

 

Don’t wait until you are better, or stable, or you have the next diagnosis

This is one I’m still learning. With each relapse or new set of symptoms, each injury or diagnosis, each upcoming test or surgery, it’s easy to think “I’ll wait until after that happens to move forward”.

But I’m learning that life goes on, and I need to be able to move forward even if it’ll be hard. I don’t necessarily mean something huge. Take setting up Chronically Awesome for example. I had the idea about 2 years before I kicked things off, but I was scared to strike out on my own in case I got ill and it all failed. I wanted to wait until I got my gastric symptoms sorted, and I wanted to wait until I could find someone else who wanted to set it up with me. But I realised I was just waiting my life away, and there’d never be the perfect time, so I just had to dive in and see what happened. Yes it can mean you open yourself up to disappointment, but if you go into it with an understanding that things might not go as planned, you’ll at least know you’re moving forward.

 

Try to see what life with chronic illness gives you, not just what it takes away

There’s no doubt that chronic illness takes a huge amount away: social life; friendships; opportunities… the list goes on. But what I have to keep reminding myself is what chronic illness has given me.

Personally, chronic illness has made me more patient, more empathetic and more open to ask for, accept and be thankful for help. I wouldn’t have found some of the deep and important friendships I have without it. Because I have spent more time close to my family, I’ve had the opportunity to get to know them as an adult, much more so than I’d stayed living far away from them. That also means I get to spend lots of time with my niece and nephew whom I adore. I probably wouldn’t still be with my (now) husband had I not happened to be out of work early in our relationship and we able to follow him when he went abroad with his work. I wouldn’t have discovered my love of movement and exercise. I wouldn’t have seen how resilient I can be in the face of huge challenges. There’s more, but you get the picture.

It’s hard to see them on the bad days, but there are relationships, experiences and discoveries about yourself that will only be made possible by being ill. Try to focus on those if you can.

 

A good GP is worth their weight in gold

Don’t get me wrong, consultants are an integral part of the process of diagnosing, treating and managing chronic illness. But in my opinion, the humble GP is the lynch pin.

I’ve had GPs who have looked scared whenever I walked into the room, and wanted me to tell them what to do (which sounds great but only works if you know!). I’ve had GPs railroad me into care plans I didn’t agree with. I’ve also had two GPs who have been absolutely amazing. They’ve struck a balance between understanding my conditions and making useful suggestions, treatment plans and referrals, and giving me the freedom to make decisions and in many cases control my medication myself.

I don’t walk into my doctor’s office worried I’ll be dismissed or talked over. I know I won’t be rushed even though my list of things to discuss is far longer than what can be covered in the 7-minute slot they’re allocated for each patient. I am able to go in and be brutally honest, whether that’s telling them that I’m not coping, or that I met a consultant and don’t feel comfortable being treated by them. This honest, open communication based on mutual give-and-take is vital in being able to effectively manage a condition. Because GPs have the power to pick up on symptoms that need to be investigated, to request the right tests or make the right referral. They have the ability to get to know you as a person (rather than a set of symptoms) far better than a consultant you only see every several weeks at most. My GP knows how I’m doing from the expression on my face when I walk into his office and oftentimes that’s what I really need.

So take time to find a GP who makes you feel comfortable and listened to. Don’t be afraid to change GPs and even practices to find the right GP. And when you find them, hold on tight!