On the Role of Family and Friends

I want to discuss the role of family and friends is, when an individual, a family member or a close friend, is facing a chronic and debilitating illness?

Being Hispanic, I have beliefs of what family should and should and behave like. I also have past experiences that affect, distort or guide what my views of what I feel and believe a nuclear family and extended family should and should not behave like. The first thing that I would expect from family is caring. Caring as in showing interest, attitude and support. Chronic illness will be around for a long time, it's here for life. It's not the flu, and it's not a transitory issue like a one time knee surgery. If someone in the family had cancer, everyone would be around with heartfelt wishes, wanting updates, bringing food, picking up the kids so mom (or dad) can rest, so parents can have some time to themselves, and so on. Believe me, I'm not making light on the risks and pain of cancer. But cancer is "visible", people know what it is and that it could be terminal. Maybe because EDS is an invisible illness, and the mortality rate depends on the level of care and what organs the illness attacks, family forgets. In the beginning months, they call and asks how you are doing, but then they're not interested anymore. This is taking too long and there really isn't going to be an end goal for treatment, it's also too complicated with so many doctor's involved in your care and you're not going to get any better; there are not going to be any "visible" results. So, there are no more calls for updates. There are no calls to ask about the pain. No calls about what the doctor said. No calls about new treatments you're trying. No more calls about the next surgery, before or after after all, you've had so many of them. YOU ARE TOO MUCH TROUBLE FOR THEM! You have your own family (nuclear family that is) let them worry about you. There is no "let me take the kids so you can rest", if there ever was that to begin with. However, unlike the family member that can so easily let it go, the chronic illness, degeneration, disability and pain is very much present in your life day-after-day-after-day, You can't choose to let it go and not be bothered with it. So you keep feeling lonelier and lonelier.

Let me give you an example: a family member recently texted me for something and I replied that I couldn't talk now I had to get a few things done before my surgery. My family member wrote back "OK" but never asked what the surgery was for or when it was scheduled to happen. NICE!


Fortunately my nuclear family is strong. My husband and I share similar beliefs and values and our family is what we like it to be. For example, we don't drink and don't believe in having the kids in environments where there are drinkers. We're also happy to stay home and share quiet evenings together, rather than attend parties. We also share the belief that, we have children so we are responsible for caring for them. Therefore, we don't often ask for childcare, from friends or family except on the rare occasion of an emergency; plus the kids are older and usually don't require it anyway. These are just our beliefs. We are in no way perfect, it's just who we are and you may disagree. However, dealing with a chronic illness is tiring and stressful, not only for me, but for the whole family. Time off would be a blessing, but because people are not interested in the invisible illness there is no break, no time off, no respite. There is no OFFER for time off because that would mean having to ask how you are, becoming involved with you, even for a moment. Not to mention, you have an invisible illness, so WHY do you need, no, why you deserve some time off ? 

Another example: one of my family members becomes upset, or does not want to spend time with the kids, because of our values and the values we are raising the kids with, are not in agreement with the family member's values; this family member wishes to impose their values and discord ensues.


Regarding friends, first you have to differentiate between friends and acquaintances. Friends stick with you acquaintances just occasionally call if they happen to see you or think of you. Friends are not family, therefore they do not have an obligation to you. They have lives and problems of their own,and should be allowed some latitude regarding if and how often they check in, and they definitely do not needed to "babysit". If you are fortunate, some friends can even become as close or even closer than family. However, through this process or, voyage of EDS, I have lost many friends and had to "refile" them under acquaintances or colleagues. This is partially die to not having the energy to meet with them in bars and other social environments. I don't drink and it would cause to much pain afterward. In short, I would be a drag to them and it would cause too much pain for me. I don't "entertain" at home because clean up would also be too much hassle and exhausting. I also get the feeling they may think I'm not exercising the "power of positive optimism" enough, as if this alone would make a chronic and degenerative illness magically disappear. Sadly, for them, I subscribe to depressive realism (read more on this in the book First Rate Madness, excellent book) so that I am realistically prepared for every circumstance. So the calls and interest dwindles from those who no longer have time to be my friends, and now live the normal life of 30-somethings. We do have a couple that visit every few months and who we vacation with. They share some of our interests and are happy visiting our home; they also help with the clean-up! I've also had the pleasure of turning a colleague or acquaintance into a friend. The times we talk on the phone, email back and forth, or have visited together have been delightful. And that's all it takes. No babysitting needed! Just some interest without the need to take on my woes. Some human interaction, some humanity, some empathy and some warmth. Come over for a movie, some coffee, a game of scrabble, some gossip...that doesn't hurt and it is sooooo MEANINGFUL and VALUABLE!

I may sound a little negative, even angry. Maybe I am. It's hard to know there are people that need support but they are abandoned because they "don't look sick" or people don't want to get involved, or just the general feeling that "it's just taking too long" so interest drops off and people that are hurting are abandoned. That one's the best! What is too long? We have to keep living with this every day for the rest of our lives and so do our families. We are frustrated and so are our families. We get tired or going to doctors, trying new therapies, new medicines, more surgeries, new allergic reactions....so are our families. We would love to say we're sick of it and we're done with being sick too!

When I grew up in Puerto Rico, this was just something we did, we cared for one another. The neighbor and family we brought over the plate of rice and beans and took the kids over to their house so mom could eat a hot plate of food and take a shower in peace. Family would come over, even once a month, just to talk, and they would call. This is what I grew up, but it's no longer the norm, here or in Puerto Rico. This is a hard concept to accept.

Many times doctor's and therapist suggest, "use family as support, keep social ties", easier said than done, they don't always stick around.

Hoping and praying....