Carrying the invisible weight of a chronic illness can feel heavier by the day. Lucy is looking happy and healthy on the outside, but on the inside she is struggling with a symptom flare-up. Is this her new normal? Read her latest blog:
I think it’s more than fair to say that I’m not feeling myself right now. In fact, I haven’t felt like myself for the last few weeks. If you know me, you’ll know that I never feel 100% health wise, but the sad thing is I don’t even feel 50% at the moment and it’s really upsetting me because it’s affecting my physical capabilities. I’m so tired, and all my symptoms are much more profound than usual. Chronic exhaustion has become a constant companion of mine and everything I do lately requires twice the effort. It’s hard to explain exactly how it feels to live with chronic illnesses mainly caused by Marfan syndrome. I tend to just keep it to myself, as most of my symptoms are invisible and it’s hard for people to understand something that they can’t see. I may look ‘well’ on the outside, but if you look closely enough, you might see the medical challenges I face every day beneath the surface. I always feel like I’m carrying an invisible weight around with me that never goes away and just gets heavier by the day. And it goes by the name of Marfan syndrome.
When my symptoms flare up like this, it’s hard to work out whether they’re starting to worsen and this is just becoming my new normal, or if my body is simply exhausted from trying to manage more than it can handle. Given the decline in my health over the last two years, the latter wouldn’t surprise me. I’ve had to overcome severe malnutrition, learn how to live with a feeding tube and deal with new health problems that have arisen along the way.
That’s the thing about living with a condition like Marfan syndrome- you have to learn to expect the unexpected as there is always a new challenge to face- Whether it’s dealing with new symptoms, an unforeseen complication, increased joint pain or simply the exhaustion of a body working overtime due to defective connective tissue. It’s difficult for others to understand the daily struggle of living in a body that requires a lot of extra effort just to function and complete simple tasks, but that’s the reality of my life. While Marfan syndrome may not cause widespread and persistent chronic pain for everyone, it certainly does for me - depleting the only bit of energy that I ever managed to maintain.
I don’t really know what the point of this blog was. I guess I just wanted to give you all a glimpse of what living with chronic illness is really like. On the outside, I may look healthy and happy, but underneath all that, I’m battling a complex set of medical challenges and I feel overwhelmed every day. Things aren’t always as they appear, and sometimes it’s important to shed light on the hidden realities that others might not see.
