How am I supposed to feel? Mental health and support

Being young and HIV-positive can make life seem like a bad dream. You experience many things that most young people don't. Many of your feelings may seem hard to manage at times. The following section attempts to look at some of the more common feelings a young person with HIV may experience.

Depending upon your background, the way you were brought up, the culture you come from or even the family you grew up in, your experience with HIV can be very different from someone else's. But no matter who you are or where you come from you are probably feeling certain things that everyone else with HIV is feeling. Let's take a look at these feelings and discuss ways of dealing with them.

One thing that may be useful to any person who is living with HIV, regardless of their age, is the work done by Elizabeth Kübler-Ross, an expert in the field of life threatening illness, death and dying.

Chances are, your mortality has been on your mind. Mortality, or knowing you are not going to live forever, is something that we all face, and yes, having HIV may cause many people to face their mortality earlier than they might otherwise, but remember that your chances of living to an old age are much greater now than ever before.

DABDA, stands for Denial, Anger, Bargaining, Depression and Acceptance. Elizabeth Kübler-Ross identified these emotions as the main experiences most people go through when they are dealing with a life-changing situation. Simply put, people who are living with HIV are likely to go through a certain process which includes the five experiences listed above. Any major change or loss in someone's life can cause someone to experience DABDA.

You may be experiencing one of these right now, or more than one at a time; there is no right way of experiencing this. Sometimes the order is as shown; other times it can go back and forth from one experience to another. Ideally, you can get to a place of peace or co-existence with HIV. That may seem like a long way off, but it is possible to eventually view HIV as a part of your life, not something that defines your life. That is not always easy. If you are sick with an infection caused by HIV then it's much more difficult to co-exist with this virus than when you were feeling fine.

Think back to when you found out you were HIV positive. How did you feel? What did you think would happen to you? Were you in shock? Did you say This can't be happening to me? (Denial) Maybe you got pissed off and felt cheated. (Anger) Did you find yourself asking some higher power to take away your infection in exchange for you changing your life? (Bargaining) Are you sad and feeling hopeless now or have you in the past? (Depression) What about getting to a place in your mind and heart that feels like you will be able to deal with whatever HIV brings into your life, and that your life goes on no mater what? (Acceptance)

Maybe you can use DABDA when things get tough to deal with. One thing that this model promises is that no matter how bad things may get, you will be able to deal with it as long as you have a strong support system. Don't go through this alone. The more help you have the better you will do. We'll talk soon about getting support.

Some things to keep in mind:

No matter you are feeling, you have a right to feel that way

There are no wrong or right feelings, feelings just are.

Feelings come and go.

You have choices about how you respond to your feelings.

You don't have to act on your feelings.

Disclosure
"  "Disclosure... it's like a freezing cold pool, you know it's less hazardous if you just jump right in and get it over with. But at the same time some days you feel like the initial freeze isn't even worth it, so you don't even get your toes wet."

-Shawn
"

One of the biggest questions on your mind may be, how do I tell...(fill in the family members, friends, etc. here)? Many young people have been in the same situation. It is important to keep in mind that they have all dealt with it in their own ways. There is no right or wrong way to disclose, or tell others about your status. While it's important to take responsibility for informing anyone with whom you may have had unprotected sex or shared needles, you are not required to tell anyone. It seems scary and difficult right now, but you might be surprised at how supportive many people will be when you are ready to talk about it.


How do you know who to tell first?

Many young people will choose one friend, counselor, or teacher, to confide in initially. There is no right or wrong person to tell first; choose someone you trust who will support you. Some people wait as long as one year to tell their family or friends. You can wait as long as it takes for you to feel informed and clear about where you are at. You may want to come to terms with your status first, before you hear anyone else's opinions or comments or you may need support right away.

Eventually, however, you may choose to tell a wider circle of people. Either way, it is OK to do that very gradually.


How do I tell them?

You may want to imagine the scenario in your head, and think clearly about how you will respond to any questions you think this person may have. Try a mini role play in your head. Try to imagine the questions this person might ask, like: How do you think you contracted HIV? Or, why haven't you told me sooner? Be clear about what you do and do not feel comfortable talking about, especially if you don't know the answer exactly or feel it's too personal.

Here are some questions to ask yourself before you tell someone about your HIV status

Keep in mind that this can be a very difficult process, even those who have been aware of their status for years.

  • Am I in a safe situation? A comfortable place? Do you have enough time to really talk about this? Do you have privacy?
  • Is this something I feel comfortable talking about over the phone?
  • Is this something I would want to talk about over the phone, or should I make arrangements to see this person?
  • Is this person likely to be supportive of me? How have they dealt with other similar issues in the past?
  • Will this person hurt me physically or emotionally if I tell them?
  • What do I hope to get out of telling this person?
  • Is this someone with whom I have had sex or shared needles, who might be infected but not know it?
  • Will I worry more if I don't tell this person?
  • Will this person feel hurt if I don't tell them, because they would want to help?
  • Can I trust this person to keep the information to themselves?
  • Does this person need to know so that I can get the medical care or social services I may need?

Be Informed

It is a great idea to gather some brochures and reading materials on HIV and AIDS, and to have them ready when you decide to talk about it. There are also a number of referral programs and hotlines that can answer questions for them, if they need more information than what you yourself can provide. You can also be prepared with listings of support groups for people who are affected by HIV and AIDS.


Family
"  With my family it was never a big deal for me. Even if they get upset, I know they are going to accept me regardless, cause they love me unconditionally, cause they're family....

-Marie
"

Depending on whether you live with them, near them or not, and whether or not you are close to them emotionally, your family may or may not be the first people you confide in. However, they will probably be the most difficult people to tell. If they are not aware of other aspects of your identity, such as sexuality, that may have put you at risk of contracting HIV in the first place, telling them that you are HIV-positive may be doubly hard. In either case, they will be upset. They may also feel honored to have been told, and your relationships may even strengthen and deepen as a result of your honesty.


Friends

They have been there for you through thick and thin. They may reflect what you are most proud of in yourself. They mean the world to you, so why is it so hard to imagine telling them? For many young people, friends are like a chosen family. Their approval can be extremely important. And the truth is, some may not be bale to handle the fact that you have tested positive. Although it is unfair and illogical, some people may withdraw from you because they are afraid of getting HIV. More likely, however, it will bring up feelings of fear about losing you. It can also be a reminder to young people who don't know their status, that they too could test positive: if it could happen to their best friend, who's to say that it will not happen to them also.

Disclosing gradually gives you more options. You can't undo the situation once you have let someone know. As time passes you will get more comfortable dealing with your condition and adjust to the fact that it may take some people a while to be able to deal with the information. They have the same rights as you do and they will very likely need emotional space and possibly physical distance to deal with it. Hopefully, time will prepare them to be as supportive as you need when they re-enter your life. And another thing to remember : if they can't or don't want to be a part of your life now that you are HIV positive, they are probably not the kind of people you want in your life anyway.

You have the power to choose, in every situation, who will help make your life the most healthy and fulfilling. On the bright side, you may make new connections within the HIV/AIDS community, and they may be stronger and more meaningful than you may have expected.

Some questions about coping


It seems the more people I talk to the more confused I get. What's up with that?

As you enter the world of HIV/AIDS there are two things you shouldn't believe: that we know nothing or that we know everything. The truth is, we still have a lot to learn but we know a lot more now then we did even just a few years ago.

Be on the lookout for individuals that have a good reputation for being knowledgeable and helpful. They should work with you to answer your questions honestly and thoroughly to help you understand your options. Let your intuition be your guide. If something sounds strange to you, continue to find out more about it. When it comes to medical decisions, get second and third opinions. This is not a time for extreme thinking one way or another. The bottom line is you are ultimately in charge of your life and what happens to your body. There are good, informed, caring individuals out there who have your best interest in mind. Find them. Arm yourself with solid, factual and hopeful information. Don't give into negative thinking and doomsayers, but at the same time appreciate the fact that doubt can be a very natural part of living with any chronic illness. AIDS is no different.


I keep hearing about support, what exactly does that mean?

Support can take many forms. When it works support can be as important as any medical breakthrough. Just think of support as a bridge, or specifically the stuff that keeps the bridge from falling down. When the support under the bridge is strong and solid, the bridge stands and does what it is supposed to do. When the support is weak it may crash down. It can be the same with someone who is living with HIV/AIDS.

Even Superman would have a difficult time living with HIV/AIDS. Let's face it none of us are Superman or Wonder Woman (well, maybe once a year during Halloween). Support can come from friends, a support group of other people with HIV, a counselor or therapist, a priest or clergy person, a doctor or nurse, a teacher or parent, a case manager or social worker, a lover or family member. It can even come from someone you just met.

While many kinds of people may support you, what they all have in common is that they are about BUILDING YOU UP when you are down. They keep you from crashing like that weakened bridge; sometimes they are able to show you the hope when you are not able to see it yourself. They offer guidance, strength, and hope. They calm your fears, listen to your concerns, and wipe the tears away. Real support reminds you that you are not going through this alone. A supporter may not be living with HIV, but their commitment to helping you places them right there with you. (Remember, they are most likely going through a lot just giving you the support, and be sure to show those supporters how much they mean to you). Support is out there, look for it, ask for it, and use it. You deserve it!


Sometimes I feel like giving up. What should I do?

Don't give up. That may seem like a simplistic answer, but for most people, it's the best one. There will be times when you may feel like you just don't want to deal with this anymore. I've had enough, you'll say to yourself. Hey, that's normal. Maybe you are feeling sick, or the medication you are taking makes you feel like throwing up. Maybe it seems that no matter what you do, nothing is working. Well, sometimes that happens, but it does go away. Yes, it does. Sometimes the feeling of giving up only lasts for a minute. Other times that feeling may last for days or weeks. If it goes on for longer than you can handle, discuss it with your medical provider or support network. You may need some extra help. That doesn't mean you have to take on a label like depressed if that makes you feel even worse. It is helpful to have some one to talk to about what you are going through. Period.

It's safe to say that no one likes having HIV. If you had a choice you would get rid of it in a minute, but that's probably not going to happen any time soon. So, it's O.K. to sometimes feel like giving up, like enough is enough. If the feeling doesn't go away and you begin to feel like hurting yourself, stop and take a breather, then DON'T HURT YOURSELF, and GET HELP. Life is still very much worth living even if you have HIV/AIDS.


I just want to feel normal. Is that too much to ask?

NO. Not at all. It's important to remember that in most ways you are still normal. Depending on who you talk to you'll get a different definition of normal. When you say you want to be normal, you may actually mean that you wish you were healthy and didn't have to deal with all that you are dealing with. That's actually a very normal thing to feel. So, maybe you'll never be like people who are not infected with HIV. But everybody has their own challenges to deal with, some physical, some mental, some spiritual. Very few people can, or would want to, claim the label normal. You are normal in a number of ways and you are a unique person, not because you are living with HIV/AIDS but because you are living, period, and trying to do the best you can.


O.K. tell it to me straight, if I do everything I am told to do will that prevent me from getting sick?

Maybe, but not necessarily. At this point, we really don't know. There really are no guarantees in life, but there is real hope. Many people are doing much better with new treatments and many have lived a long time without treatment. Everyone with HIV lives with UNCERTAINTY as part of our lives. The chances that some one will get sick and die because of HIV/AIDS continues to decrease. That's also a simple truth!


I thought that when I learned I was positive I would get my life in order and make me appreciate more, but some of the same things I used to trip over still bother me.

Finding out your positive doesn't automatically make any of that happen. For some people it makes life a lot crazier, especially at first. Living with HIV/AIDS, like any other chronic condition is about progress, not perfection. It takes time. It's about slowly learning how to look at your life in new and exciting ways. It's about finding out what is important to you and what your priorities are. It's about dealing with stuff that you have been to afraid to deal with. It's about realizing that no one is perfect and that the road you have been forced to walk can sometimes be a bumpy one. It's about believing that even though HIV/AIDS may be very difficult to accept, the experience of having HIV can make life even more worth living.

It's about remembering that we are human beings first, people with HIV/AIDS second or maybe third or even fourth. Sometimes HIV/AIDS feels like a huge part of who you are; other times it's not as big. Whatever the case, you still have to deal with the rest of your life. If you had problems with your family or lover you're still going to have those problems now. HIV/AIDS may be big, but it doesn't overshadow the issues you may have with your self esteem or self image. In fact, now is the time to deal with them, so they don't become more extreme or more difficult.

Some people talk about the Gift of AIDS. Believe it or not, for some people it has been a gift. They have been able to experience life for the first time in a way that they never thought possible. Others think Gift and AIDS don't ever belong in the same sentence. That's O.K. too.


You mean I still have do my homework, pay the bills, and be responsible?

Yes. You are still the same person you have always been and you still need to take care of all those things that you were taking care of before HIV/AIDS came into your life. On a nicer note, it can also be amazing to realize that life does go on.

OK, I feel like I am learning what I need to know about having HIV/AIDS. What should I do next?

Live! Besides that, here are some suggestions:

  1. Learn as much as you can, because there is always more to learn.
  2. Pursue your dreams to be a kickboxer.
  3. Get the support you need and deserve.
  4. Build sand castles.
  5. If you're taking medications, take them correctly and consistently.
  6. Reach out for help; don't wait until things get bad.
  7. Ask someone you feel safe with to give you lots and lots of hugs.
  8. Travel! Explore! Even if it's just to a cool neighborhood you've never been to.
  9. Take charge of your health, body, and life.
  10. Instead of focusing on a cure, think about how you can heal your life a little bit every day.
  11. Laugh, have fun, and eat ice cream.
  12. Fall in love (not just with people, but with places, things, and ideas).
  13. Write a lot of letters to yourself.
  14. Have faith.
  15. Believe in yourself!

If you are thinking about joining a support group, you may look into one that is led by people your age.

Here are a few thoughts from Seana O'Farrell, a facilitator of Bay Positives' Monday night drop-in support group.
"  I have had a variety of experiences with support groups over a three year period. I have been on both sides of the coin: supportee and supporter. I have been to an open support group, a youth specific support group, a women's specific support group, and even a support group specifically for heterosexuals (this one tended to be more of a dating pool for me). I have also attended support groups at different times of the epidemic. When I first started attending support groups in January of 1996, protease inhibitors were just coming out, and there were many mixed feelings in the community ranging from fear to confusion to excitement. For the majority of 1997, it seemed as if people were floating on a cloud of hope and a little bit of denial, and the mood reflected this. Lately, it seems as if things are coming full circle. People are back in that state of mixed emotions. Side effects and compliance are hot topics, and many people are finding that the other life' issues such as dating, housing, substance use, and stress are not disappearing with the advent of HIV meds.

I had never been in a support group prior to testing HIV positive in November of 1995. I had an idea that it would be similar to what I had seen of AA meetings on television. 'Hi, my name is Seana, and I have HIV,' and everyone would clap and say, 'Welcome, Seana.' I had many fears going into my first group. Would the people judge me? Would I not fit in because I was a young, straight woman? Would there be visibly sick people attending? I didn't know what to expect. My fears subsided soon after walking into the room of 20 HIV positive people. The group members took me under their wings right away, the majority of them being gay men in their 40's and 50's. That group was very crucial to me at that time, and I got a lot of support and information. That was the place that I learned that I had to be my own expert. I was amazed at how much these people knew about the virus and how to take care of themselves. They encouraged me to do the same. The one drawback, however, was the difference in the generations, which became a running theme. As I was worrying about whether I would ever have my first relationship, my new friends were telling me that relationships were overrated, and to not bother. Easy for them to say. Many of them had been in 20 year relationships, and I had never had a healthy long term one. That was when I realized that I needed to be around my peers. That's when I started attending the BAY Positives' Monday Night group. It was just what I needed. I realized at that time how valuable it was to be getting support from people who had the same or similar issues and concerns as myself.

I've noticed as I've shifted from being a member of the group to a facilitator, that times have changed for sure. Attendance is down. People are focused on living with HIV, and not dying from it. Young people with HIV, especially, are trying to find new ways to adjust their lives around their status, their fears, and their meds. One thing remains constant, however, for myself and members that attend my support group: HIV is a huge part of our lives, and the support of our peers helps to make it manageable.
"

I Never Though I'd Make it to 34
"  I have been infected since I was 19 years old. Even though I tested positive only 10 years ago, in April of 1989, I am certain that I have been living with HIV for 15 years. In some ways it doesn't matter exactly when I was infected, but I do think it's important to show that even someone like me, who has been through AIDS hell, can still be alive and thriving after all these years.

It's kind of strange to try to summarize my experience with HIV/AIDS in a couple of pages. If I allowed myself to, I would probably be able to write hundreds if not thousands of pages filled with my thoughts, feelings, fears and hopes. Let me just say that this has been my experience, no one else's. Maybe others who have been living with HIV/AIDS can identify with some of what I say, but we must remember that no one deals with HIV/AIDS exactly the same way. It is a very personal journey.

AIDS is not over, not by a long shot, but the monster is a little weaker then it used to be. As I write this I think back to all my friends that are no longer with me. I have known so many beautiful, vibrant loving people that were taken away much too soon. Today many people are not only living longer healthier lives but are beginning to believe that they actually have a future to look forward to.

There is no one way to live with HIV/AIDS and there is no one way to respond to its challenges. This is my story. I offer it to you as one individual's experience with life and death and ultimately LOVE.

I have had PCP three times, topical and systemic Kaposi Sarcoma, mycobacterium avium complex, wasting syndrome and a number of other related illnesses. I have had to take dozens of medications over the years. I have also had the displeasure to know how it feels to have chemotherapy, radiation and pentamadine infusions. I have had allergic reactions, nausea, fevers, coughing spells, diarrhea, fatigue, skin infections, sometimes all at the same time.

Yes, it was rough and very, very scary. Many tears were shed, and many nights were filled feeling like I would never make it. It was a very dark time. One way or another I carried on. Slowly, very slowly a glimmer of light started to drown out the darkness. New advances were being discovered and for the first time HOPE seemed more than just an elusive dream. But there were disappointments along the way. I had to go through many weeks and months of feeling lousy because these new medications were toxic at first, but even after all that something started to work. Slowly but surely symptoms started to go away, I started to look healthy again and more importantly felt like I was living instead of dying. Even the blood tests that I took every few weeks showed that something was changing inside of me. I have been near death a couple of times, but now life started feeling more like a probability then just a mere possibility.

But I couldn't have done this alone. I made sure that I became as informed and knowledgeable as I could. I listened, asked questions, attended lectures, seminars, support groups and went to therapy. I also tried to experience love as much as I could. Love from my friends, family(s), colleagues and brothers and sisters living with HIV. It didn't take away the fear and loss that seemed to walk with me every place I went, but as time went on I began to feel a freedom from their grip and I literally learned how to stop and smell the roses.

I am not sure what the future holds for me, but I know where I have been. Because of my experience I am able to take the 40 pills a day that I need to and still feel like I am a very lucky person. I am not cured, but in some ways I feel healed. My body bears the scars of this disease and my heart and spirit has been deeply bruised but I am still here, still getting up in the morning, wondering what I will do when I grow up! I think about the next time I am fortunate to fall in love and even the day when I can hear the sound of my son or daughter calling me papa. I think I would make a great father. So there's a lot left to be done, a lot left to experience and a lot of life left to live.

I can't believe I made it to 34, but it would sound a lot better if I can say I can't believe I made it to 50. Maybe that's not just a dream after all.

With love and deepest admiration to all of my brothers and sisters living with HIV/AIDS. Because of all of you I know angels do exist.

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