Support Systems - having support systems in place is crucial to your wellbeing

Support in all its various forms is vital for those with health issues and clinical evidence proves those with strong support systems live longer and manage their illness better – their survival rate is higher.  Having a strong support system is therefore crucial to your physical, emotional and mental wellbeing. 

 

Having Sjogrens can be a socially isolating and lonely experience.  Most us look well (fabulous in fact) and only those closest to us can see the impact of our condition.  We often totally exhausted by trying to function in our day to day life.  ‘Keeping on keeping on’ is difficult.  For some of us our symptoms make it almost impossible to engage socially on any scale as large groups and noisy places are tiring and we become over-stimulated.  As our social circle narrows, and the number of people we interact with shrinks, depression can become an unwanted companion. 

 

I wrote previously that while we lose friends and acquaintances at a rapid rate during our illness, the awesome ones do come.  When I was first diagnosed with Myelodysplastic Syndrome (MDS) a form of bone marrow and blood cancer/disorders I attended a workshop run by the local Cancer Society.  It was there I met the first of many awesome friends who have become dear to me and now part of my A Team. 

 

Upon diagnosis with Sjogrens I sought similar support and after a solitary walk down lonely street and its many dead-ends I eventually found that support.  I needed support knowing it was vital to my well being as my emotional health rules my physical health.  If I am feeling blue and life an endless grey fog, my symptoms feel worse and my ability to take the steps I know will help me decreases.  Everything becomes overwhelming and pointless. 

 

I wouldn’t be able to function without my support systems which includes the ‘awesome ones’ who came into my life post diagnosis (replacing the friends who floated away), the friends that didn’t float away, Alan and JoJo, my sister Jan, my wider family, my writing group, my medical team and the ‘tired tarts’ ). The ‘tired tarts’ met this week at our local beachfront café.  We are a diverse group of 20 or more of fabulous women and men experiencing various autoimmune (and other) conditions.  We share many diagnosis and ‘add-ons’ such as ME, Reynauds, Fibromyalgia, Rheumatoid Arthritis, Interstitial Cystitis, ME to name some of the lovely things we share!  Several of us have been through or are going through cancer.  Lucky us, we struck the jackpot!!  That I am the only Sjogrens girl does not matter.  What does matter is we are all able to seek and give support and pass on the knowledge and experiences we have accumulated during our journey.  Our time together is not filled with doom and gloom – we laugh a lot (mostly at ourselves, especially when brain fog strikes mid sentence!)  It is empowering to be around people who totally understand what you are experiencing, how you are feeling emotionally, physically and mentally and who despite suffering their own pain still give unselfishly of themselves, their wisdom, kindness  and their compassion.    

 

After my walk down lonely street, I promised myself no one would be alone or in need if I could help.  I would help them get off lonely street and to a safe space in their health journey.  Hence this blog, talking out about Sjogrens and reaching out in support of other Sjogrens warriors wherever they are. 

 

I urge you to set in place your own support systems (family, well friends, ill friends, medical team, alternative practitioners, on-line support groups or physical groups – whatever works for you).  Break down the walls that isolate us so.  Seek support and when the opportunity presents give it back to those who you meet along the way. 

 

Go gently, go build and strengthen those support systems and take care of yourselves.

 

Much love, Sandra xx