Help wanted. Hours must be flexible, pay poor. This job will interfere with your social life. Those with a morbid fear of doctors need not apply.

The sheer amount of time that I spend ferrying myself or the kids to and from hospital appointments is insane.  With long-term conditions like Ehlers-Danlos syndrome, Charcot Marie Tooth Disease, Postural Orthostatic Tachycardia syndrome and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome it’s all about management.  And management is all about being seen in loads of different hospital departments by a range of therapists and doctors all with the aim of helping you – well manage you – because no one has a magic pill to make all of this better.  Orthotics, OT, physio, respiratory physio, cardiology, rheumatology, neuromuscular, fatigue clinic, ophthalmology, orthopaedics, urology, gastroenterology (and I’ve probably forgotten a department)!  What this means for us is that at least once a week, sometimes more we trot off to one of the hospitals notes in hand.

Because there are three of us regularly seen being organised is a must.  The kids each have their own file with all doctors letters, school reports, emails, telephone calls and minutes from meeting are stored in one place. Any diary’s I have been keeping to help keep track or symptoms are here too.  At appointments I take a slimmed down version of the above with the latest letters from the different professionals copied and ready to share.

I think that I’ve picked up a few tips over the years.  Here are a few pointers if you are just starting out as a professional patient or if you  have been in the role for a while but are feeling a little overwhelmed and need to get back on track.

My Top Tips

1. You are your own best advocate.

Always, always remember this.  It is top of the list for good reason.  You know your self best and if you are advocating for your children you definitely know them best.  Always trust your gut.   You need to work with professionals to access the right services and treatments but you need to have a handle on the whole picture, particularly if you are seen in many different departments or hospitals.

2. Go into an appointment armed with information and questions.

Be prepared.  Ask them to explain something in more detail if you are unsure.  Ask to see you scans and get them to explain them.  Ask them why they have come to their decisions about your care.  In my experience most professionals enjoy this kind of interaction with their patients.  If they are confident in the decisions that they are making then they are usually more than happy to take the time to explain or discuss things with you.

3. Research your disease or condition until you feel like an expert.

Read, read, read and when you think that you know everything read some more.  You can be your own best advocate when you are empowered with the up to date information and research in your condition.

4. If you feel like you know more than your doctor, it’s time to find a new doctor.

Never be afraid to get a second opinion.  You need to trust your doctor with your care and have a relationship based on mutual trust and respect.

5. Find support, whether through online communities, in-person support groups or therapy. You don’t have to go through this alone.

I have found some amazing support both at support groups run by charities and online.  In the early stages after diagnosis meeting someone face to face with my condition helped me to put things into perspective. Always be wary of negativity online or falling into the “my symptoms are much worse than yours” trap, i have never understood why some people think chronic illness if a competition!  Don’t be put off there are some really good groups out there you just have to find them.

6. Ask for help when you need it, it’s a sign of strength, not weakness.

I tell myself this everyday but putting these words into practice have always been hard for me.  I am learning to communicate how I feel before I crash, instead of after.  It’s much better for everyone.

7. Don’t ever let anyone tell you it’s “all in your head.”

It’s not, its real.  Who are they to judge what is happening in your body just because they haven’t found the genetic markers for your condition.  People with MS were told that it was all in their heads for years until the brain imaging was developed to identify the cause.  Just because you might be having a good day doesn’t mean that you are cured.  It also doesn’t mean that you shouldn’t enjoy your good days for fear of being judged.

For decades I knew that my body wasn’t right,  I knew that there was something going on with me that no one had been able to explain, I was “full of things no body ever died of” as my Nan would so eloquently put it. I persevered and 26 years after symptoms started I had hEDS diagnosed.  Don’t give up.

8. Educate the ones you love about your condition so they can understand how to help you.

Teach the people you love and trust about your condition, point them in the direction of places that they can go to learn more.  And let them help you.

9. Be persistent with doctor’s offices, medical billing, and insurance companies.

Hospital letters and referrals get lost in the system, messages don’t get passed on, test result sit in someones inbox for weeks waiting to be actioned.  It’s just how it is.  You need to become a squeaky wheel, follow-up with emails and telephone calls just to keep all the cogs turning.  It’s a pain that we have to do this to get answers, however, inaction can create serious financial distress in the long run, delayed referrals or test results.

10. Exercise in whatever shape or form you can.

Chair yoga, gentle stretching, walking, Pilates. It can help you to heal faster and teach you to listen to your body.  I have learnt so much about the posture and alignment of my body through the practice of Pilates. Find something you can do, no matter how small and do it everyday. You’ll be amazed at how quickly your ability to do more increases if you are consistent.

11. Lastly, your disease does not need to define you. Find things that still make you happy.

You are more than your condition.  A mum, a dad, a sister, a brother, an aunt, and uncle, someone’s child. You may be a great writer, artist, mathematician, a computer whizz or be able to talk the hind legs off a donkey. We all have strengths and we need to learn to recognise them and play to them. Focus on the good, always.

What do you love to do? Celebrate your strengths, let me know in the comments.

 

 

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2 Comments

  1. Spot on Sarah! Great post – sometimes it is tricky just remembering which hospital the appointment is at and as my dad says, “which ology?”. As for feeling like I know more than the doctors about all things EDS, don’t get me started!! “Of course, you were a nurse so you know all about it” errr…no! My speciality was Head & Neck cancer and palliative care!! Hope the kids have enjoyed the Easter hols and kept well. It is just a shame the weather has been so lousy! C x

    • Sarah Wells Reply

      I absolutely love the holidays. No school runs for the little two for two… whole… weeks. All half terms would be two weeks if I was in charge and I think you need at least three at Christmas – that holiday is far too busy!! And only two hospital appointments – bonus. Navigating Me/cfs has been an even bigger minefield that EDS, if that’s possible?!? I didn’t know you were a nurse. I get the same as I was a teacher but being part of the system as a parent is a VERY different experience. Load of love, S x

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