Living with LAM

Treating LAM Pneumothorax (Lung Collapse) Lung Transplantation
Pulmonary Rehabilitation Pleurodesis How You Can Help LAM Research
Supplemental Oxygen Conserving Your Energy Terms and Definitions

 

 

 

 

 

 

Receiving a diagnosis of LAM may cause you to experience feelings of anger, denial, shock, grief, helplessness, confusion, despair, sadness, or fear.  None of these feelings are uncommon and many women experience one or all of them during various stages of the disease.  These emotions are normal responses and are all a part of the grieving process.  Grief isn’t related just to death; it can be the result of any loss—including the loss of your health and/or the lifestyle you once enjoyed.  Understand that you’ll probably grieve because of some of the changes you may face with LAM.  Many changes could be far in the future or may not occur at all, so it’s best to stay optimistic, focus on the positives, and try not to dwell on your disease.


You may experience another common reaction to your diagnosis: relief.  If, over a long period of time, you, like many patients, have experienced symptoms such as shortness of breath or lung collapses without your doctor finding a reason for your problems, you’ll likely be relieved to finally have an explanation for your health issues.  You’ll feel validated knowing that you didn’t imagine all of these problems and that ever-powerful fear of the unknown you’ve been living with now has a name.

As with any chronic illness, your family and friends will want to provide emotional support for you.  And, just like you, they will experience a flood of emotions and will have many questions and concerns regarding your diagnosis.  But you need to understand that your closest supporters may not feel any more comfortable in their new roles than you do.  Good communication is key for all of you.  Let your loved ones know what you need from them; doing so enables them to feel helpful and supportive—rather than helpless and powerless—in their relationships with you.

Good communication also helps to ensure that your relationships remain healthy, even in the tough times.  In fact, you may find that some of your relationships become even stronger! Being treated “differently” by friends and family is one of the greatest concerns for many LAM patients.  It might help your support people to accept and better understand your desire for things to “remain the same” if you assure them that when you do need assistance with something, you’ll let them know.  A diagnosis of LAM can be difficult, but poor communication will only lead to more difficulties.  Keep those lines of communication open!

In addition to concerns regarding finances, insurance coverage, and employment, you may have concerns regarding parenting and marital relations.  All of these issues can trigger additional worries and anxieties. To help manage these stresses consider complementary therapies to nurture your body, mind, and spirit.  Exercise, acupuncture, massage therapy, yoga, and reflexology are just some ways to relax and enhance your coping skills.  If the stresses accompanying your diagnosis of LAM become overwhelming, seek emotional support from a friend or relative or from a professional such as a psychologist, a counselor, or a member of the clergy.  Many LAM patients have done just that.  Learning how to manage stress, anxiety, and depression is necessary in all phases of life, but it’s even more essential in maintaining an optimum level of health now that you’re living with a chronic disease.  Be patient with yourself.

When you’re feeling ready to confront LAM on a larger scale, you may want to attend the annual LAM conference—LAMposium.  During this annual spring meeting in Cincinnati, Ohio, LAM patients travel from all over the world to share in the camaraderie of this wonderful weekend. You can attend informational sessions to learn more about LAM, and specially designed sessions are also available just for your group of support people.  Medical professionals, who work with LAM and who are themselves attending concurrent clinical and scientific sessions, give presentations to women with LAM and their families, and they are also available to answer your questions.  LAMposium is an opportunity to spend time with other women and family members who can relate to what you’re experiencing.