Who has an invisible illness?
My wife, Natalie/Nat (Blog owner)
What invisible illnesses does your partner have?
Endometriosis, Fibromyalgia, Hypermobility & IBS.
Had you heard of these things before your partner introduced you to them?
Other than IBS, I’d never heard of the main illnesses until Natalie started researching them before her diagnosis’.
Have you since researched the above invisible illnesses for yourself?
Yes, many times to see if there is anything that I can do to help and even just to understand them better. Many times, people ask “what’s is it that’s affecting your wife? “. Sometimes in saying Endometriosis, Fibromyalgia or Hypermobility, some people understand what it is or have at least heard of it; but most of the time people have never heard of these conditions. So, it’s giving the correct medical term, teamed with a brief description of some of the symptoms and the impact they have on my wife. There seems to be a lack of familiarity unless someone knows first-hand of another person who has these conditions.
What is an invisible illness?
An Invisible illness is when a person looks fit and heathy to the outside looking in but inside is a very different story!
What is it like living with someone with an invisible illness?
Living with someone with an invisible illness has its ups and downs (mainly ups though😊)! Some days we do lots of things and other days, not so much.
It’s difficult not knowing how the pain my wife experiences will be on a day to day basis, pain is always there, just some days it’s really bad and other days it can be slightly better. We’ve learned to take each day as it comes and make the most of our time together.
A busy day will lead to a few days – a week of Natalie being wiped out and exhausted.
Electric heating pads are an everyday essential item for Natalie … and baths are run regularly. Heat seems to be one of the only things that help.
Together we’ve achieved so much, regardless of whether of not Natalie had a name for her illnesses – we support each other, we love each other, and we have each other’s back no matter what life throws our way.
What is the hardest part of your loved one having an invisible illness?
What hurts the most is seeing my wife go through so much s**t, knowing that I can’t really do anything to help! Watching her go from being in the gym, hiking up mountains, traversing valleys, just generally being active seven days a week with me, to becoming housebound for most, if not all of week because of debilitating pain! (But she still Doesn’t let this stop her!).
After my wife lost her mum, it was a very hard time for her and for us all – but having a complex surgery on top of that, wasn’t all that happening during this time. I’d just been accepted onto an apprenticeship and weeks after Natalie’s operation I moved to Birmingham five days a week for six weeks. I left with Nat’s blessing, but that didn’t make it any easier. Watching the person, you love from a distance lose their mum, their health and then have to live alone whilst healing, made me feel helpless to the situation. But we always make the most of things and one phone call and I’m back on the motorway home, Nat always says to look at the bigger picture and me getting an education is important for us both and our futures.
It was a horrible time, just knowing I couldn’t be there for her physically.
What are you most proud of (in relation to your loved one)?
My wife is the most resilient person I have ever met! I thought I was stubborn! But Natalie is stubborn in the way that she won’t let anything defeat her! No obstacle is too big to overcome! Watching her take three surgeries and countless diagnosis is her stride isn’t easy.
Day in day out she pushes herself to do the things we would call basics (get out of bed, get dressed, wash, cook, clean etc) but where there is a will there is a way. She also pushes to ensure that some quality of life remains! Natalie has been using aids to help get her around; using walking sticks, crutches and recently the addition of a wheelchair. As a young woman, it can’t be easy to be using these aids, but Natalie does it with a smile on her face! Who cares what people think!! Right?! The most important thing is that it gets Natalie out and she loves it! It makes me SO proud!
Finally, look at what she has created – look at what I’m writing and who I’m writing it for! My wife took her diagnosis’ and didn’t shy away from them, she embraced them and educated herself around them – from her blog to her Instagram she’s using her voice to try and make change or at the very least start conversations. People find it awkward or uncomfortable even mentioning Periods, but Nat flies a flag for them, she’s open about everything she goes through because from her perspective (and mine), no one should ever have to experience the journey she has… they really shouldn’t, it’s not fair!
What do you wish other people knew about Invisible illness?
I wish people actually knew what Invisible Illnesses where.
When it comes to some of my wife’s conditions, I’ve sat at appointments or phone consultations where even most of the health care professionals we encounter are clueless to it! (Not their fault). There is just not a lot of research into any of the illness that Natalie has! Endometriosis effects 1 in 10 women (including trans men & nonbinary) yet most people have never heard of it! It takes 7 years on average to diagnose! I just wish the whole taboo about “women’s problems” would just be broken once and for all and not just shoved under the rug! That way more could be done to help people like Natalie.
What are your hopes for your loved one?
My hopes for the future are to help Natalie to get to a place that has more good days than bad! A better quality of life for my little angel and just the live the best possible life together that we can! I love you little one!
A note from Natalie:
“I can’t thank my husband enough for being brave enough to talk about our life with invisible illness, I’m hoping when this post goes live I’ll be in having my fourth surgery – wish me luck, Nat. xox”
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