The Lipodystrophy Look

"I Feel Self-Conscious That Everyone Who Looks at Me Can Tell That I Have HIV"

October 2002

The Lipodystrophy Look

After years of being HIV-positive, I seem to have recently developed the "look" of having this disease. My face has lost its fullness and my cheeks have sunken into my face. Now, I feel self-conscious that everyone who looks at me can tell that I have HIV. As a single person going out, I sense that people find this HIV-positive look a sexual turn off. When I speak to my therapist about this she states that it's in my mind and that no one really knows I have HIV and that my lifetime partner is out there somewhere waiting for me. However, I feel differently and this affects my going out, having sex and any possible future relationships from these contacts. I have learned to deal with a lot physically over the years but how can I change my mental outlook when it comes to this?

A Response to This Case Study

We all have to develop different coping methods for dealing with the positives and negatives of our own physical makeup. This ongoing process continues as we age and change throughout our life span. Generally speaking, when people don't like aspects of their facial appearance, they will either minimize or over-emphasize their actual effect on their physical appearance and within their personal interactions.

The sting of rejection you sense coupled with your HIV status is a real issue and concern that must be addressed since it inhibits you from social interactions. Ultimately you need to regain your perception that you are a desirable person with HIV. If you don't feel this way, it can strongly affect your physical well being; and retaining good health should be your number one goal. Let's examine the effect this has on your mental stability and how you can gain a sense of control over this new facial change.

Although your therapist does not agree with your viewpoint, I am not here to disagree or contradict her theories. I do not see you as a patient and I have no direct visual impression of your facial situation. Your relationship with your therapist is a working relationship and if you feel she is off base in her assessments then you need to discuss this with her. I would challenge her statements that your face indicates no HIV status and with equal importance I would address how your perception affects your daily personal interactions. If you are questioning her expertise as a mental health professional, then discuss possible termination with her and research other psychotherapists that hopefully are more appropriate in meeting your emotional needs.

From your statement, I can see your point and understand your feeling of rejection. Based on psychological research people do assess and judge others physically very quickly, sometimes in seconds. Their reaction could be based in part on what they perceived as possible physical illness from looking at your face. I would not go as far as to state that all people make this HIV connection you speak of, although some populations may be more sensitized to the facial structure you have discussed.

The world is not a just or balanced place, and I do not follow the myth that in this world there is a predestined "Mr. or Ms. Right" or someone with whom a relationship will last a lifetime. If the people in your dating pool perceive you as having HIV -- a life-threatening disease -- then you could face a number of problems. In a just world we would wish for everyone to be more open and less judgmental, but personal assessments are being done in a matter of seconds. Thus, based on a small number of these interactions you would then naturally develop a more guarded stance in your seductions and this would clearly affect your social skills.

Lipodystrophy 101

With that in mind let's clarify this "HIV look" you have written about. The technical term for this condition is lipodystrophy, and it really can change people's appearances. People who are knowledgeable about HIV can often see signs of it present in the face and body. Lipodystrophy is a catch-all term for a number of conditions that can occur in people living with HIV. It is a medical term that means an abnormal change of fat. Medical experts cannot agree on what causes lipodystrophy, or even how to define it. The current thinking is that lipodystrophy has four components that are distinctly different but related:
  • Central fat buildup: increased fat around the stomach and waist, increased chest size and a buildup of fat on the back of the neck or near the shoulders.

  • Peripheral fat wasting: a loss of fat in the face, arms, legs, hips or butt; sunken cheeks can result from loss of fat in the face.

  • Lipid elevations: high levels of cholesterol and triglycerides in the blood are often seen with lipodystrophy.

  • Insulin resistance: most food is turned into glucose (simple sugar) in the blood; glucose is a major source of energy in the body.

Because no one knows for certain what causes lipodystrophy, medical professionals also don't know how to prevent it or treat it. However, here are some logical steps as possible pathways to deal with what appears to be a healthy perception of rejection based on your lipodystrophy.

  1. You need to be surrounded by a non-judgmental HIV-positive support group that can contribute to your self-esteem. In addition, these groups can provide you with answers for the issues and concerns you are having. By continuing to address your feeling of rejection in a therapist-run group, you can receive the feedback and insights you need to function more productively. These groups can give you a sounding board that will help you to develop a more grounded perspective on your own self-perception. The sense of belonging you can gain from an HIV support group may also help you with other social obstacles.

  2. Reduce your focus on your sexual attractiveness. Allow yourself to let go of your thoughts of rejection and insecurities such as "being viewed as unattractive" or "having HIV" by other people. These thoughts can fill your mind and actually distract the dating process.

  3. Logical thinking would encourage you to seek on going medical advice from your medical community. Nutritionist to should also be researched. The more you know about what you are eating and putting into your body the more control you can feel over what foods maybe having what affects on your body.

  4. Plastic surgery is an area that is generally discussed and weighed for its possible contribution to a solution. Today, no matter how you look at it, many Americans at some point consider plastic surgery at some stage in their lives. In many cases, self-image can be changed and long-term preoccupations with facial or body features can be extinguished. Plastic surgery as a possible solution should also be considered just due to its overwhelming availability and in some situations reasonable cost.

    However plastic surgery is a medical operation so precautions must be taken when making your decision. Research has reported death, disease and hideous outcomes for patients caused in part by a doctor's limited training or by the medical operation facilities. This should wisely remind us to thoroughly research a doctor's medical background and what medical precautions and possible risks are present in the medical operation.

    When seeking any medical work, you must be clear on what you want to have done and the final medical costs. Your insights on the best and worst possible outcomes can be examined with your psychotherapist, your chosen medical doctor, your family and possibility your HIV support group, in addition to your own personal judgment on this very important medical matter.

    Keep in mind at all times when interviewing plastic surgeons (and you should interview as many as possible) that this is your face, your body, and possibly your life that you are placing in the hands of someone else. Regardless of their medical training, the "great" price they offer or their impressive list of past clients you must attempt to move slowly and steadily and not act on impulse. There are no real "deals" when it comes to medical work; you do need to use sound judgement every step of the way. Hopefully, if you chose this route, it would be a positive outcome and worth your cost, stress and time. And ultimately relieve you of this facial issue as an on going problem.

  5. Don't let your perception of your disfigurement cloud your social interactions. Go in with an attitude of giving people the full benefit of the doubt. If some people are consistently pointing out your lipodystrophy verbally or with physical cues, get away from those people who bring you emotionally down. Don't be quick to generalize that all people are rejecting you based on your perception. Everyone is different and there is not one mold for all -- judge people as you wish to be judged as an individual.

Getting Beyond the Surface

In conclusion we do live in a very superficial society; how you look does weigh heavily on how you are treated. Studies have indicated that people will be more receptive to and more tolerant of a person they consider to be attractive, projecting positive attributes onto that person. But you can go with the flow; and develop methods in addition to what I have suggested for dealing with this recent change in your facial appearance. In addition please continue to do your medical research and hopefully in time you will feel a sense of control over this new development. Good luck.

J. Buzz von Ornsteiner, Ph.D. is a psychologist and behavioral consultant in New York City and writes the "Psychologically Speaking" column.

This article was provided by Body Positive. It is a part of the publication Body Positive.


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