14 Years In The Making – A Note To My 30-Year Old Self

Blog from our Founder and Managing Director Sally Callow for International Women’s Day 2021.


Wow, you have just graduated as a mature student, you did it! Well done you!

Today is your 30th birthday, you do not know this yet but in just 9 weeks’ time, your life will be changed forever. All your hopes and dreams at this moment in time will have to be altered or dropped altogether.

Over the next 2 and a half years, you will have many tests and Doctor’s appointments, and you will get upset, frustrated, and even angry at no-one knowing what is wrong. Then, one day you will meet a locum GP who you will never see again. He will tell you ‘you have Chronic Fatigue Syndrome, think yourself lucky you don’t have M.E. That’s so much worse’. He said you had ‘fatigue’ and just needed to go for a walk to get better. You will not know this for another 5 years – you have a neurological disease. You have come a long way since then, now you know all the ways that what the locum GP said was wrong and could have possibly harmed you.

Your health is the main factor in who you are today, it has moulded how you ‘BE’ you every day, but it has also shown you how to adapt whilst always putting your health and energy limitations first.

‘Woman of Inspiration’ Award 2020.

There are many challenges (good and bad) that have made you into the award-winning female social entrepreneur that you are today including two ‘you have skin cancer’ episodes, M.E advocacy with a soft toy called Foggy, teacher training (yes, you still have to do everything ‘properly’), a Post-graduate degree (studied hard at the start of your M.E/C.F.S ‘journey’ – you passed!), and 6 years of workplace bullying – the formal complaint resulted in you being told ‘you weren’t bullied you were just unpopular’. You handed in your notice the day after receiving the bullying report. I’m proud of you. Sometimes you must recognise that some battles are not worth fighting with limited energy. Sometimes, your M.E/C.F.S advocacy feels like a popularity contest and it’s a contest you often lose in epic style, but you persevere and get the job done. Shout out to all the other patient advocates who doubt their effectiveness, thank you for your persistence and determination.

Accumulatively, the challenges above made you who you are today.

You became something you would never have dreamed of – Managing Director of a Community Interest Company (CIC) that YOU founded. There have been many people throughout your social enterprise journey who have vocalised their doubts as to your abilities, partly due to your health restrictions but also because you had no experience or knowledge of business! Founding Stripy Lightbulb CIC involved a very steep learning curve, but the CIC was launched in September 2018 (e-training launched March 2019).

Now, two years on, you also have Long Covid – I forgot to mention – we are in the middle of the COVID19 pandemic. This additional chronic illness is making life harder for you, you have had a range of new symptoms join the M.E/C.F.S ‘party’. On the plus side (I had to dig deep to find a positive!), 14 years of ‘managing’ your M.E has helped you to get through this additional bump in the road.

You will find out, by the time you reach the wonderful age of 44 that it is incredibly difficult to get professionals outside of the M.E/C.F.S global community to understand the need for education about YOUR (and 17-30 million other patients’) disease. It is an uphill struggle, you have frequent periods of self-doubt and frustration, your chosen ‘mission’ can feel very isolating at times.

Your 44-year-old self knows you can do this, you are after all a disabled female social entrepreneur with a lived experience of the issue you are tackling. Your lived experience has made you strong-willed and determined to bring about social change. You cannot get any more remarkable than that.

Keep going!

Happy International Women’s Day!

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