What’s in a name ? #Fight #advocacy #struggle #relationships #lifelessons #Chroniclife #Autoimmune


It has been my experience over the last decade that the 80+ number of Autoimmune diseases could very easily be renamed to calling them all FIGHTERS disease.

– From the moment you start developing symptoms and pain you will spend your time FIGHTING to find a doctor who will listen. Many people who have autoimmune disorders have a difficult time getting correct diagnosis. In some cases, people are mistakenly diagnosed with other conditions. Other times, doctors tell patients that their symptoms, which are often vague in the case of an autoimmune disorder, are just in their heads or are stress-related. The quest to find a doctor who can arrive at a proper diagnosis can be difficult. The average time for diagnose can be up to 8 years.

– From the moment you develop an Autoimmune disease you will fight to keep your job, friends, mobility, respect, relationships, social interactions.

– You will fight to do the things that people take for granted like, walking, moving, eating, bathing, speaking.

– You will fight to find medications that actually help and assist you in your ability to manage your disease/s. This can take many, many years (if ever) and countless number of combinations and side effects can make you wonder if the medications are actually helping of making life worse.

– You will fight to get your friends / family to understand your daily challenges.

– You will fight to find others to connect with and understand what you are going through. # Note: Just because someone might share a diagnosis as you, you may find you have NOTHING in common with them on a personal level or even in your disease activity or progression. Out of 1000 sufferers you might find a handful of people you connect with.

– You will fight your own self criticisms and fears. They can be loud, even deafening at times.

– You will fight to be able to fit some life into your illness and do some things that you actually enjoy and that bring you peace and happiness.

– You will fight to retain your dignity and integrity, when your body is no longer predictable or your health is no longer reliable.

– You will fight to remain as part of the world, if your life has changed dramatically and your illness/es are progressing.

– You will fight to show how much you love and care for people, without being able to physically do things for them. Finding new ways to communicate and nurture those important relationships is often a very difficult challenge of these diseases.

– You fight to find your feet and strength after every let down, disappointment and being pushed and shoved from specialist to specialist and doctor to doctor. You get used of being put in the ‘too hard basket’ and riding the ‘specialist’ merry-go-round. You often want to give up in disgust and sadness.

– You fight the ignorance and judgements from the healthy world. You may be told that you should change your diet, change your attitude, change your exercise program (if you can exercise regularly) … and many other forms of ‘patient blaming’ all aimed at making you feel responsible for your circumstances and your prognosis.

– You fight to rebuild your life; sometimes rebuilding anew everyday.

– You fight your insecurities, frustrations and emotions.

– You will fight to find peace in the midst of so much emotions, confusion, frustration, pain and the unknown.

– However, to love and be loved becomes the most important fight of all.

Gentle hugs,

3 thoughts on “What’s in a name ? #Fight #advocacy #struggle #relationships #lifelessons #Chroniclife #Autoimmune

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