I will be the first to admit that I didn’t recognize my son’s eating disorder for what it was early on. There were times when it crossed my mind, but I would quickly shove it under the rug. He was a male and the presentation, as I have pointed out before, wasn’t what you would typically think of as an eating disorder. Having said all that, when I was sure what I was dealing with, getting help was anything but easy.
I have always had a difficult time with the concept that adulthood begins at 18 and mom and dad no longer have access to any information if the child doesn’t want that information shared. While I do understand that there has to be an age identified as adulthood and I understand the HIPPA laws and the reasons for them very well, it is difficult going from being the person responsible for your child’s healthcare one night and being unable to learn anything about them the morning of their 18th birthday.
This was especially true as our son became more symptomatic. He was eating less every day and he was continuing to increase his exercise. During this period, there were some disturbing symptoms that indicated medical problems were beginning as well. He was constantly cold and would stand beside the wood stove warming himself whenever he wasn’t exercising. His skin was very pale and he had small bruises all over his arms and legs. His dad and I tried to convince him to go to the doctor, but he refused and we had no leverage because he was 18. We threatened to take his car away, not pay his car insurance, and even to stop school loans if he didn’t comply and go to the doctor, but he would tell us that we could do that, but he still wasn’t going. He wasn’t normally a defiant kid and it was very clear he was very sick and afraid.
About nine months before he was hospitalized, he stopped talking. Initially, he wouldn’t tell me why he wasn’t talking, but when I pressed him he told me that his throat was sore. I looked at his throat and he had white spots on the back of it. I encouraged him to go to the doctor, but he refused telling me it was just a virus. About two days later, he was in a great amount of pain. The white spots were all over his tongue, the roof of his mouth and just covered the inside of his mouth. He also had them other places on his body. He was miserable and I suggested taking him to the emergency room because I was afraid it was thrush. He refused to go with me to the ER, but was so uncomfortable he agreed to go to the doctor the next day.
Our son needed me to drive him to the doctor, but refused to allow me to go back to the exam room with him. He was back there for a long time and I was so nervous sitting in that waiting room that I thought everyone there could hear my heart beating. I was praying that he would be alright and that they could provide some relief.
When he came out, he said that he thought they would hospitalize him, but couldn’t agree on what was wrong with him. One thought thrush, another doctor said “weird” virus. They wanted him tested for STD’s and said that they were worried about his weight loss and maybe he had diabetes. The nurse practitioner asked him if he could be anorexic and he said no. They let him go and told him to use a mouthwash and come back if he wasn’t better. I was so upset that I called the office when I got home. They informed me that they couldn’t speak with me about his care because he was considered an adult. I asked to speak with the doctor and was finally put through to him. He told me the same disclaimer and I asked him if he could listen and not give information (I knew that he could). He did and I explained my belief that our son was anorexic.
We returned to the doctor several more times because he didn’t improve. The doctor did convince him to get blood work for STD’s and, although, he had no STD’s, he was severely anemic and had a very rare form of strep indicating an opportunistic infection from malnutrition. My son was scared and started letting me accompany him on doctor visits, but still was clear that he would make decisions, not me. I did explain all of his symptoms regarding eating and exercising. The doctor listened as my son repeatedly said it wasn’t a problem despite the lab results and the drastic weight loss.
To shorten this story, I will summarize a bit. We saw 4 different doctors. It wasn’t until he had drastically declined that extensive blood work was ordered and blood pressure and pulses were checked. Despite the drastic change in his appearance, his significant weight loss, frequent illnesses, and low heart rate, and all of the abnormal blood work he was told that he could run, just try to cut back and take an iron supplement. I would argue that I didn’t think that he could control his behavior regarding eating and exercise and that he would not take the iron pill. This was to no avail. Even after extensive blood work was ordered by a fourth doctor (which came back with severe anemia, abnormal phosphorous, platelets, glucose, etc.), and a discovery that his pulse was in low 30’s he was still not called anorexic and told that he could run and exercise, just up the iron supplements and try to rest some. I was stunned. As predicted, our son refused to comply with the supplements and couldn’t control his eating disorder behaviors.
It would take our son nearly passing out one night when he would reveal what I hadn’t heard the doctor say. He informed me that his pulse was in the low 30’s and the doctor commented that this was very low, but sometimes athletes had low pulses. I asked this doctor (as I had asked the 2 doctors previous to this one) to force treatment on him. I knew that they could certify him and make him an involuntary patient, but none of them would. They refused to even tell him to stop exercising when I asked them to. I was not able to get any information other than what my son was willing to allow and no one would use the word anorexia or eating disorder.
Our son was certainly not an easy patient. He refused to take supplements and refused to cut back his exercise. Even so, he was never told that his condition was very serious and no one insisted on mental health treatment. It was brought up a few times as a possibility since he seemed to have a difficult time cutting back on the exercise, but it was always couched as something he “might” think about. I am not sure if it was because the medical profession was not very well versed in handling eating disorders; if it was that my son was male and the presentation was not typical, or if they just didn’t know what to do. Whatever the reasons, I felt very let down and very helpless.
I finally had to threaten my son with taking an “emergency petition” for evaluation. This would mean that he would be picked up by the police and taken to an emergency room for evaluation. I was gambling because after my experience with four doctors, I wasn’t sure that the ER doctors would force treatment either. Fortunately, with this threat hanging over his head he agreed to an outpatient appointment with a psychiatrist specializing in eating disorders. At this appointment, our son was told that his pulse was so dangerously low and his blood pressure was so concerning that they would certify him and force him to the hospital if he didn’t agree to go. He allowed the doctors to talk with his dad and I and we were informed that he would likely have died within another 2-3 months. We were devastated. Even more devastating was when the psychiatrist looked at me (not my husband) and asked what I was thinking to have let this go on for so long. I was to blame. It took a very long time to work through guilt that took less than 30 seconds to impart. Having an adult child who requires treatment and refuses is very difficult. There are things that can be done, but they are difficult and hindsight is 20-20. I hope that our experience and the suggestions/tips below help someone else who may be facing these difficult circumstances and decisions. My experience was with an adult child, but I hope that anyone dealing with an adult loved one can relate. There are a lot of things that I would do differently if I had this to do all over again (and I hope I never do). Here are some ideas/suggestions for anyone finding themselves in the same dilemma:
- Try to encourage early intervention: Malnutrition causes many health problems which can severely cloud judgment. If at all possible, try to get your loved one to agree to see someone the moment you even suspect there is a problem. The earlier the intervention, the less invested in the eating disorder the person has become. As time goes on, investment in the eating disorder behaviors grows and letting go of them is much more frightening.
- Call the doctor: The doctor cannot give you information but he/she can listen to any concerns that you have. Reporting things like sensitivity to cold, hair loss, pale complexion, bruising, mood changes in addition to weight loss and over exercising are important.
- Ask to have blood work drawn: Tell the doctor that you suspect an eating disorder and ask if they will order lab work consistent with that suspicion. Bring up the subject of eating disorders early on and ask if they are comfortable diagnosing this or could make a referral to someone who is.
- Ask if they will check for orthostatic pulse and blood pressure changes: Often blood pressure and pulse change dramatically with sitting/lying and standing. This is very common with an eating disorder.
- Ask the doctor if they will make a recommendation for mental health evaluation: Ask the doctor if they are willing to make a recommendation for an eating disorder evaluation and also ask if they are willing to force the issue.
- Contact your local Department of Health and Mental Hygiene: Contact your local agency to find out your options for forcing an evaluation should this become necessary.
- Contact a local psychiatric hospital: Psychiatric hospitals often have specialized Eating Disorders Units now. Even if this isn’t the case, they can refer you to a hospital that does. When calling, ask about involuntary treatment should that become necessary.
- Join a support group early on: Join a support group for yourself as soon as you suspect that your loved one has an eating disorder and isn’t willing to obtain treatment. It is very likely that you are not alone and others have been in your shoes. They can often point you in the right direction and can also be a source of support while you are going through this process.
- Go online to www.nationaleatingdisorders.org or call 1-800-931-2237: They can help advise you in a number of ways.
- Don’t be afraid to let your child know that you will take steps to force treatment: Don’t be afraid to tell your loved one that you will take steps to force treatment if they will not go voluntarily. Reassure them that you love them and won’t stand by and do nothing if their condition becomes life threatening. Offer to go with them to an appointment.
- Remind your child that they have much more control by voluntarily agreeing to treatment vs being forced into treatment: You always have much more control if you agree to help. Being certified as an involuntary patient doesn’t take away all of your rights, but it does take a great deal of control away from you. Ally yourself with the part of him/her that likely wants to get better and wants to keep control.
- Don’t’ waste time: If the doctor you are speaking with isn’t willing to assist you, move on. Call some of the other resources listed above and discuss your particular situation. There are many more resources available now and more coming every day.
- Remember you are not alone: You are not the first person to have dealt with this. It is easy to feel isolated and alone. Get support for yourself too.