What would you say to people newly diagnosed with this illness?
Dear friend, if I could have spared you this aspect of life I would have because I have experienced it and it is not my wish for anyone. However, that is not within my control; neither is it in yours.
The first thing I will say to you is never be ashamed or hide the truth about your illness from anyone. The way you treat your illness is the way others will treat it and you. If you are ashamed and timid then others will treat you as if there is something to be ashamed about.
Secondly, do not let the illness define you. There is so much more to you than this illness. It is not who you are it is an illness that you happen to have. Do not lower your goals and expectations of yourself based on being ill. Your path may be a bit more complicated than some but it does not mean that you cannot achieve all you have ever dreamed and more.
Thirdly, become your own expert, research the illness and journal your experiences. It may seem tedious at first but that information will be important when it comes to your care. The symptoms and effects of this illness are so wide and varied that you need to understand how it affects you specifically and convey that to your healthcare team. They do not know all. You have valuable contributions to make in your care.
Next, advocate for yourself. This is most important when you have a chronic illness and one that most times leaves you looking just fine to those looking on. You need to be prepared to fight some battles on your own behalf. Expect it…………its inevitable.
Fifthly, talk to other women. Learn from others who have been through the same or similar. Acknowledge that you are not alone…………..at times it may seem that way but you are not. There is a large community out there, get connected. The support is vital, especially in the difficult moments.
Next, accept there will be good days and bad days. This is the nature of life with this illness. There may be treatments and surgery, time off work and pain. There will also be great days. Days with family and friends and lots of happiness. Enjoy these days most so that they can carry you through the not so good ones.
Lastly, never give up or in, keep fighting and keep on moving forward. The battle may seem long and difficult at times but you can do it. This will test you in ways that you may never have imagined but you are strong………….stronger than you think. You can do it.
You can live with this illness and still have the best life ever.