I can think of many illnesses that are isolating. Illness, by nature, is isolating because we simply don’t feel well. The person suffering from an illness, whether it is physical or mental, often spends at least some of their time isolated when the symptoms are most severe. What stood out to me as a mom and a caregiver was how incredibly isolating our son’s eating disorder was for, not only him, but the entire family. Surely, there are other illnesses that render entire families isolated as well, but for the purposes of this post I will stick to eating disorders.
When I look back over the progression of his illness, isolation really could have and should have been a red flag that we were all sinking with the ship and intervention was badly needed. Instead, the isolation became a coping strategy for us all. It helped us to keep things confined; it was an excuse not to have to talk about it; it was a way to avoid and to hide; and it was a way to ignore and talk ourselves into believing it really wasn’t that bad. We could delude ourselves into believing that one good day meant things were turning around; we had a handle on it. The isolation left us without that reality check of the shock and concern of others outside of our family who would have been putting a mirror up to us, so to speak. Someone would have laid it on the line with honesty.
As I have described in other posts, his illness really began with an obsession around exercising. Even before that began though, the OCD was quite prominent just after entering college. There was no convincing him that he had studied enough. The exercise was, at first, intended to relieve the stress of all the studying. It didn’t, of course. The intense need to study was isolating in and of itself. It left time for little else (except exercise). As things progressed, the isolation progressed too.
Eating disorders often encompass so many other mental health issues as well. There is often depression, anxiety, and certainly OCD is present in a very high percentage of cases. Those things are isolating for sure. You really can’t see those things though (with the possible exception of OCD where compulsions might be visible sometimes). Eating disorders are visible. In the case of anorexia, the weight loss is very visible and frightening in many cases. Often, there are rituals around food preparation and the sufferer may be unwilling to eat outside of the house or in the presence of anyone other than immediate family.
As the family member with the eating disorder becomes more and more symptomatic, the family often stops having guests over. At first it may be just not having guests over to the house for dinner. The family may continue to accept invitations to holiday meals, etc. with family and friends, but make an excuse to leave the child/loved one with the eating disorder at home (sometimes a parent also has to stay behind if the child is young).
Soon no one is invited to the house at all, except perhaps family, and that slows to a stop as well. Holiday meals start taking place with only the immediate family and at home. This is the way it was with our family anyway. Excuses were made so that we didn’t have to have meals with anyone outside of our own family. We would meet at a separate time to celebrate the holiday and we always managed to see to it that a meal wasn’t included. We couldn’t stay too long would be the excuse.
Other children in the home stop having friends to the house. Our own children began making any excuse that they could find to go to a friend’s house rather than have that friend come to our home and see the shape that their brother was in. No more sleepovers in our house, no friends for dinner, no birthday at home. We all managed to meet people elsewhere, as if we didn’t have a home of our own. We were like nomads of sorts, always traveling, but never settled even though we had a permanent residence.
It didn’t take long for people to notice the changes in the way we behaved. We practically barred the doors and the excuses for declined invitations were suspect. Soon we were not having contact with anyone unless we absolutely had to. Even trips to the ballgames to watch our other children play were isolating. We sat alone and when approached by other team parents, the conversation was quick and nervous because we didn’t want any undesired questions.
We even became isolated inside our home amongst ourselves. We nervously waited for what would happen next. What argument would break out over food and exercise? How many times would an OP evaluation be offered and refused? How many times would forced treatment be threatened? How much more weight would be lost this week? We waited and worried and argued, but didn’t communicate.
The eating disorder loves nothing more than isolation. It feeds on that isolation to deceive, to divide, and to distort. The more isolated the family becomes, the more the eating disorder weaves its web of confusion. Everyone starts hearing its voice in one way or another. The eating disorder gains power over the entire family.
It is so important for families to seek help right from the beginning; as soon as that caregiver role begins. The more power taken from the hands of the eating disorder the better are the chances for recovery for the entire family. (See “A Crisis Plan for Caregivers”). It is so important not to let the family become isolated.
Figuring out how to talk about the eating disorder and who to talk with about it can be difficult. I am not suggesting going to the other extreme and that everyone should be informed or that everyone has a right to know. You and your family have a right to your privacy. The decision should be yours and made based on what feels right for all members of the family. A certain amount of isolation and privacy might be welcome. The important thing is that it shouldn’t be an isolation “imposed” on you and your family by the eating disorder. It shouldn’t be borne out of embarrassment, fear, and feeling the need to hide.
We did recover, but the isolation delayed that recovery and it did a lot of collateral damage. It has taken work to repair the damage to the rest of the family. Had I to do it over again (and I pray I never will!) I would take charge from the very beginning and the decisions would be ours to make, not the eating disorders. We would set boundaries and would decide where to seek support and we would choose with whom to share the details of the eating disorder. The eating disorder would not be invited to participate in decision making.
It is important to find support to relieve the isolation. The truth is that most of the family and friends that are close to you likely want to help. Being informed of what is going on and what they can do to help you might be a welcome relief for them as well. Seek the support of those who are going through what you are going through. Support groups are a wonderful relief from the isolation. Most of all, it is important that the eating disorder is challenged from the very beginning. Make it clear that it will not be allowed the power it craves. Don’t allow it to isolate you or your family. Assume control in the form of a plan right at the start. Get help developing that plan and make sure that a plan to deal with isolation is included.