To Those of You at the Beginning of Your Chronic Illness “Journey….”

I just wanted to write something I have been thinking of a lot lately, reflecting back on the time when I was so sick and looking at where things stand now. I have been thinking about it a lot because my arm seems to be improving – it has been many years of pain beyond what most people can imagine and fear that necessarily won’t end until I do – but how there is, for most of us, a time frame in which things get bad and then a time during which they improve. I know this isn’t the case with all chronic illnesses and I know many illnesses are progressive and/or degenerative (hell, I think Behcet’s is degenerative; i just don’t think there is the research behind it to explicitly state that yet), but I do think the following applies to everyone who faces severe chronic illness of any kind, whether the time frame is a week or a decade or a lifetime.

There will come a time when you can’t take it. There will come a time when you give up. You might be like me and just give up internally and look like you’re just “there” to the world; you might play the part and act as if you’re fine. However you “face” the world, there will come a time when you have had it and so much of “it” that you literally cannot take anymore and you give up without even trying or needing to give up – you just inherently GIVE UP. It is that all-encompassing numbness and that feeling that when you can’t take it any longer and more sh!t keeps going wrong you just accept it because there is no alternative.

I just want anyone who has NOT yet seen that point to know that it will pass. I want YOU to know that no matter how awful things seem, they will either get worse or they will improve – and if you haven’t seen this point before, it is more likely than not that they will improve … and you will face this again … and again … and again. And I know that sounds awful and seems like a terrible thing to say to someone who is just learning that he or she has this awful illness, but hear me out, please! I just want you to know that although there WILL come a time (and timeS) when you just give up, PLEASE REMEMBER THAT YOU ARE STILL ALIVE AND YOU HAVE TO DEAL WITH THE REPERCUSSIONS OF WHATEVER HAPPENS BECAUSE OF WHAT YOU HAVE DONE NOW DOWN THE ROAD. Take care of yourself. I don’t mean this BS “self love” thing because it is so much more than that – you have to be able to take very BASIC care of yourself before you can even start to think about the “higher” “self-love.” Make sure you eat well. Make sure you brush your teeth twice a day. Make sure you brush your hair. Make sure you shower and change your clothes – and if you need help, ASK FOR HELP. I have been there and I have been too “proud” to ask for help and it brings me to tears writing this but I have also seen what giving up ON yourself leads to when you give up in general – and it is not good. I don’t really want to delve into more details than that right now, but just know that although it is hard to ask for help, the REAL challenge of “self-love” is in being able to break through your own foolish “pride” and CARE FOR YOURSELF BY ALLOWING OTHERS TO HELP CARE FOR YOU.

Your hair will grow back. Your skin will heal (at least in places; I don’t know about all of it yet because I just discovered a very large cyst today and I am kind of worked up about that right now … so if I seem a little distracted here, I apologize – I AM distracted …). The moon face will go away and the water retention or weight gain will go away too. You might have permanently disfigured bones and joints (I do) but they will also, at least in part, heal. Everything – and every one – has its and his or her own timeline, and it is just a matter of seeing through the “depths of despair” to get to the other side. And I know there are some people who don’t have anyone to turn to or to ask for help and if you are one of those people, please message me or contact me and I will at least be someone who can listen and who can empathize.

It is incredibly difficult to deal with the conflicting emotions of being newly diagnosed with a chronic illness – it is at once liberating to know “what is wrong,” especially if you have lived for many years with the illness and never knew what was wrong or people told you it was all in your head or worse, and terrifying to face. It is one of the few things that brings tears of happiness and immense sadness. And it is just the beginning for many of us / you.

I know this was rambly and I apologize for that, but I just wanted to let you know that there is ALWAYS a light at the end of the tunnel … and although there might be a seemingly infinite number of tunnels that might seem infinitely long, they do, necessarily, always end. I just want you all to know that it is absolutely IMPERATIVE that you learn how to take basic care of yourself at your worst NOW, BEFORE IT HITS, so that when you are at your “rock bottom,” you can at least get through it with the fewest “complications” left to deal with later on in your life.

I am wishing you all a happy and healthy day and I hope to be back soon … soon and cyst-less….

❤ Always, Beth


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