Chronic Illness and Friendship

I recently posted a “status update” on “friendship” and how I am, despite all the issues I have faced, a good friend. This is a very true statement – I am loyal beyond what most people consider to be possible or reasonable, if (and only if) the person with whom I am “friends” makes reciprocal effort (I do not expect the same “degree” of effort, just reciprocation and understanding). This is a quality I have always had – I am ALWAYS there for people in their difficult times, I am ALWAYS a shoulder to lean on, and I know for a fact that I know more about some people than their current spouses know just because the people with whom I have invested time and energy are people about whom I want to know as much as possible. At any rate, I bring this up here because it seems some people found this to be a “funny” statement – a “response” to which I do take great offense.

Now, as a side note, I do have to say that although I am an outgoing person and I do like to meet new people and have very few “boundaries” when it comes to meeting people I might never see again (and being “open” about myself in general), I am an introvert – time with other people, even people with whom I enjoy spending time, is time that drains me. I have to spend at least that much time and often much more time just recovering from interactions with people – this has nothing to do with the people involved (honestly, if I can spend 24 hours with you, you necessarily mean the world to me!) but just with my personal psychology. It is difficult for me to be out and about both physical and mentally. It is very draining on me and I do have to recover in solitude from interactions with others.

Back to the friendship and chronic illness bit – I have something of PTSD regarding all of this because I have lost most of my best friends and “loves” to chronic illness, if you could explain it in this way. What I mean by this is that after even a few months or years of severe chronic illness that kept me from going out AT ALL and even talking much of the time, most of my friends just left me in the dust. I have had friends that just stopped talking with me after I had to go home from Pittsburgh because I was so sick (this was after my battle with two bouts of C. Diff, an exploratory surgery and appendectomy, a 20+-lb weight loss, the beginning of the Behcet’s going systemic, &c.) – after a few attempts at meeting me back in Pittsburgh (what was about a 5-6-hr-long drive for me – a trip I couldn’t make even if someone else were to take me) and hearing that I could not make the trip, these “friends” basically just stopped all communication with me. Likewise, all of my “best friends” from high school stopped inviting me out, never invited me to their weddings (despite inviting all of our other “friends”), never even bothering to tell me about important occurrences in their lives. All of this has left me very “jaded” regarding “friendship,” although it has not affected my ability to make new friends (as I have proven to myself and others moving to a new town where I knew no one!). I suppose the “moral” of the story here is that you can have hundreds of “friends” with whom you were incredibly close – but at the end of the day, you can never really be sure who will have your back – you just have to do the best that you can do (given the limitations of your illness or disability) to be a good friend to others so that you NEVER make anyone feel the way you have been made to feel (assuming you have experienced the same sort of things as I have with this). It is really an awful thing to lose friend after friend after friend and to see them celebrating their lives and not even bothering to ask you to join them only because you have some sort of illness (that has, by the way, likely taken almost everything else from you as well).

This is a very difficult subject for me to discuss, so I do apologize if this is incoherent or jumpy in any way. I have lost almost all of my “old” friends, and I really hope I can keep the friends I have made here when I move this month (that has been a really difficult thing for me to try to get my head around – something I am still struggling with, honestly; which is worse, not being able to sleep and being constantly bullied or losing contact with the first people you have befriended in over a decade? There is no clear “winner” in this battle, that’s for sure.). I am at the point in my chronic illness “journey” where I CAN at least take a little time to spend with others – I am not quite as sick as I was 5 or 10 years ago when I couldn’t even physically leave the house or I had to be pushed in a wheelchair to get around or when I was in and out of the hospital regularly with meningitis and encephalitis and optic neuritis and internal bleeding. The people I had once considered friends have no idea how awful any of those things are, and I know it is not their fault not to understand, but I do “blame” them for not trying to make more of an effort to be compassionate and just be there, even just to send a card or send out an invite. It does, very truly, break my heart.

So, sappiness aside, I am a good friend. I have not been able to “be there” physically for many people and for most people, it seems, that is “not enough” as far as friendship is concerned. For me, however, I see things the other way around. For me, friendship is something that is there between people despite physical barriers – it is when people can lean on each other for emotional or mental support no matter what else might be happening in their lives. It is sharing those important “life events” with others no matter where those others might be and what might be happening in their lives. It is not failing to include people because they have some illness or disability that prevents them from physically going places. That is not kind and that is not fair.

I also just wanted to add that to all of you who do not suffer from severe chronic disease and can get out and do things with others and do attempt to be friends with those who are ill or disabled – please do not be “needy!” It is equally “not nice” for someone who has severe health issues of any kind to be bombarded with messages as soon as he or she goes on Facebook or for his or her phone to be blown up with texts. Take the hint if that person responds and then stops responding or only responds intermittently – it is just too much for us to deal with. I know it is for me. I do not have the energy to keep up with that even when I feel “well.”

At any rate, this is a topic to which I will undoubtedly return – there is so much to it and there are so many experiences I have had with this that have scarred me and that have also made me a better person. I would love to hear about your experiences – either publicly or privately – and, as I mentioned before, I AM a good friend when others are in need of a good friend, so if you ever need someone just to listen, please do not hesitate to contact me! As always, I hope you are having a happy and healthy day wherever you are in the world and I hope you have found at least a few people you can truly call “friends.”

❤ always, Beth