my Rare disease.


sounds like hardly any exist.

on the reality side, SO many exist that those of us lucky enough to be suffering from one are likely to be unnoticed as we feel symptoms, indefinite, invisible symptoms which don’t add up to a lot on the dot-to-dot in a GP surgery for years and tears and years.

title is little more than a short term feeling of validation – “see? i HAD something wrong!”.

the title diagnosis in most of them is followed before too long with words such as:

  • incurable
  • lifelong
  • chronic
  • each case individual
  • rare disease
  • regional specialist

and to be honest that may be IT.

occasionally there are signposts for services which may apply, and may be of use for either sanity reasons- as you are NOT the only weirdo who has your thing on a global support group. ALSO signposting MAY entitle you to a pain management option, a treatment of a few symptoms, and a BUS PASS!

i have won many accolades in life….this was NOT one.

my RARE DISEASE diagnosis was a brief relief that i hadn’t gone mad….but then was the start of a journey of relatively

  • little information
  • GP unable to help
  • pain clinics
  • aids – sitting, standing, showering and wheelchairs.
  • rehab team (due to mine having surgical implications and complications)
  • less ability
  • new vocabulary
  • less friends
  • more disability
  • constant pain.
  • fatigue which can’t be explained.
  • not BLISS!….

my Rare Disease has erased so much of my potential to DO ANYTHING.

my Rare Disease has erased so much of my PERSONALITY – although i have tried to fight to keep that….

my Rare Disease has erased any semblance of a SOCIAL life….initially though too may “no thank you”s and latterly through no invitations!

my Rare Disease has sharpened my sense of humour – and if i lose that…GOD help the world.

my Rare Disease has seen me vanish from real community existence due to inability to get out and about for 2 years.

my Rare Disease has brought me 3 clothes sizes… gained JUST as part of the package.

my Rare Disease has potentially threatened several internal organs due to heavy medication i have no choice but take.

my Rare Disease has taught me how to take CHARGE of a medical appointment and to GAIN what you need from it. How NOT to alienate yourself from specialists who help you!. How to say “thankyou” after you do get help, is important in keeping open a chain of contacts.How to build a team of people who respect you and who you value for their experience and help. That is my safety net. From my physio to my neurosurgeon… all equally important… i need to know them, and be able to call on them.

my Rare Disease has brought me an EXPERTISE in my CONDITION as realistically i (or we as my husband is there):

  • juggle ALL the drugs,
  • contact ALL the specialists,
  • decide who we need to call and when
  • call for extra pain relief when the need arises- and it does.
  • evaluate the need for follow up Appointments,
  • decide when i need hospital admissions,
  • ask for new medical equipment.
  • and we teach the medical staff who we meet as we go .
  • I will from now on, go into hospital and leave WITH my rare condition and be TRUSTED to be it’s “umbrella care”…
  • the specialist who overviews ALL my CASE is ME

my Rare Disease has made me appreciate i CAN NOT control life. I can only live with what i have. AND i am so lucky to have a husband and family who have grown to accept, tolerate and help me through every little part of every day.




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