MPN shadows and the battle for sanity.
– Jeremy Smith
At our Facebook MPN Forum site we cover many topics. From treatments and lab reports to what’s going on in our lives. Seldom do we delve in to the subject of depression, yet many MPN Patients suffer from it. I understand this is a delicate subject and not everyone feels comfortable sharing the pain they feel from the mental burden of being diagnosed with an MPN. However with the recent passing of Robin Williams we are reminded of how the mental demons of life can dominate a persons mind and we should be talking more about depression. We also know there can be a sense of loneliness associated with our diseases. In the most severe cases depression and despair so overwhelms a person they choose death over life.
This overwhelming sense of loneliness can create an unhealthy environment within our minds as well. Often dragging a person in to a state of mind where we have deeply dark discussions with ourselves, and no outlet to share these thoughts with. While our wives, husbands and friends can provide a great deal of support they do not feel our pain the way we do. We often feel it’s a burden to share our deepest feelings with others. Instead we keep these thoughts inside of us, which build up over time and become a kindle to pushing us further down the path to depression.
All of us know the painful shock to our mental reality when a Doctor explains to we have been diagnosed with an incurable blood cancer. Your once normal life has been taken from you. The feelings of being overwhelmed by the threat of your life ending more abruptly than you had ever imagined is staggering. Losing the normal life you once had is devastating. Its can be incredibly difficult to recover from all of this without outside mental health assistance.
Then there the constant Doctors appointments and lab reports, the regiment of pharmaceutical options and in some cases a series of on going phlebotomies, all of which can be emotionally and physically exhausting. If you have PV you begin to worry about transitioning to MF. If you have MF you worry death is much closer to your front door. No matter how strong a person you are this can be extremely devastating to your psyche easily leading you to a state of depression along with anxiety and panic attacks. You can also feel as if the walls are closing in around you and this fear can create additional problems for you.
There might be times when you look over at your family as they are going through daily life and the voice in your mind chimes in with a chorus of negativity. “I won’t be around to see my six year old daughter graduate from high school. Who will kiss my son goodnight?” If you are a single parent the voice might say. “Who would ever want to fall in love with me with my MPN?” There are of course many other stories we create in our minds when we are up there all alone thinking to ourselves and most of them are not healthy for us.
MPN’s like Cancer and other disease can represent a huge weight of stress and anxiety, on top of that the daily struggle just to manage our everyday lives can be stressful. No person can handle all of these events and thoughts by themselves. Mental Health is just as important as MPN Health yet we hardly acknowledge this let alone discuss it.
I know for me when I am up in my head it’s not the best place to be. My wife gets upset with me when she catches me up there. There have been times she looks over at me and says. “Mr. Mitty anyone home today?” I am up in that head of mine again and she has caught me there. I have not heard a word she just said. I know we are supposed to be on our way out the door to meet friends for lunch. I should be focused on getting ready mentally to be out the door but I am not. Instead I have drifted back in to my own World and the topic of discussion in my head is my MPN. “Why did this frikin-dreaded disease happen to me? What did I do deserve this disease?” Like most people I know life is not fair but I can get angry sometimes. It is unfair no doubt about it but it will not change the hard cold facts I have an MPN.
Clearly I am not paying attention to what my wife was saying. I understand my wife wants to hear the truth. However should I tell her right now at this moment what I am thinking? I choose not to tell her and instead tell her I was thinking about a project at work. This of course does not go over well and like the puppy caught peeing on the carpet. I tuck my tail between my legs and listen to her go on about my being up in my again and how I Walter Mitty it too often.
Unless you’re an MPN patient it’s difficult for those around you to truly understand how you feel. I remember my father trying to console me when I was first diagnosed. He tried hard to understand how I felt but he could not. Six years later when he was diagnosed with incurable Cancer he finally understood what I was going through and we could talk about how we both felt.
Our head is a place many of us go because it’s where the dark secrets reside and we do not want to share these thoughts with our significant others, family or friends because of how it might make them feel. Of course we do not want to burden anyone with our darkest pain either. Neither of my brother’s who I am so close with wants to talk about my medical situation. They just cannot handle the truth. Their older brother is dying and they are helpless to change this.
See a mental therapist has a very positive impact on my life. Over time it’s helped me to accept my fate and discuss and understand my darker thoughts. Understanding why we feel the way we do is an important step in feeling more normal again and releasing the stress and anxiety that can permeate our lives at times. It’s an on going battle to keep my head on straight however the mental work including meditation has helped me calm down and not over react to a bad BMB or a Doctor expressing some concern. Today I am able bounce back much more quickly now. I have new tools to deal with my on going MPN Life and I feel much more positive about my everyday life.
The mental anguish from our MPN’s can be more crippling than the disease at times and we have to speak up when we hit bottom, not keep it in. Otherwise over time our damaged psyche has the potential to slip in to a deeper depression. Some of us do not leave our homes due to this and others require medication to treat depression, and face constant battles with anxiety and panic attacks.
I like many of you get tired of talking with Doctors about my MPN and there are times I leave the MPN Facebook Forum not for the reasons I tell you but because it’s difficult to hear of friends passing from the same disease I have. We all want to find a way out of this mess but sometimes it just not possible. Sometimes we have to accept what is most true. That at some point we will all die and if it’s not from an MPN it will of course be something else.
According to the American Cancer Society “it’s normal to grieve over the changes that cancer brings to a person’s life. The future, which may have seemed so sure before, now becomes uncertain. Some dreams and plans may be lost forever. But if a person has been sad for a long time or is having trouble carrying out day-to-day activities, that person may have clinical depression. In fact, up to 1 in 4 people with cancer have clinical depression.”
“While it is not abnormal to feel low or depressed from time to time following the diagnosis of a blood cancer, it becomes a “clinical depression” or “major depressive episode” when the symptoms are stronger than normal or persist for too long.”
Clinical depression is diagnosed when it lasts for more than a few weeks and when it has a severe impact on your life. It requires treatment when you have experienced at least five of the following symptoms for more than two weeks:
A sad, low or depressed mood for most of the day almost every day.
Changes to eating habits, weight or eating too much or losing interest in food.
Losing interest or enjoyment of activities that used to bring you happiness.
Change in your sleep patterns, either sleeping too much or too little.
Feeling helpless, worthless, or guilty
Thinking excessively about death or considering suicide
Difficulty focusing on tasks or making decisions
Severe mood swings
Diagnosing depression in people with leukemia, lymphoma or myeloma can be difficult because many of the physical symptoms listed above can be attributed to their cancer.”
Let us not forget that some of our medications can also play a role in depression. Which is why it’s so important to track any symptoms prior to taking a medication to make sure your depression is not from the medication, but could be from another source?
There are of course MPN support groups to help you through your depression buts support groups are not a treatment for depression or substitute for a professional health care professional. Should you get depressed seeking help immediately is important for a quick recovery. Starting early affords you the time to find the right person for you. No one should feel embarrassed about seeking the care of a psychiatrist or psychologist to help you with your mental health.
September represents twenty-five years of survival with my MPN and me. It’s a long time to survive with an MPN but I would give anything to make it go away and yet it will not. This is the reality of an MPN.
I like many of you I will always have a battle going on inside of my mind between the positive and negative thoughts. It’s important to always take the time to remember the good things in your life because we often take the good things for granted. When the negative thoughts come it important to focus on whether or not they are truthful instead of automatically accepting them as truths. When I notice the balance between positive thoughts and negative thought shifting too much to the negative I place a call to my mental therapist and go in for a quick mental tune up. The mental therapy has allowed me to win my battle for mental sanity in the up and down crazy World of MPN’s. I hope this discussion in some way helps all of you have a better day.
Take me back to the Contents
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Comments on: "MPN Life – The battle for sanity" (18)
Thank you for “getting it.” I used to be a very high-energy person, and then crashed with fatigue about five years ago. This left me with feelings of worthlessness and guilt. When my ET was diagnosed in the course of assessing a serious heart valve problem, I guess the guilt lifed a little: I’m not a slug, I’m really sick. But the downside: I’m really sick.
I think the isolation is hardest. I’m an older person of limited means, and getting out to socialize causes a lot of stress. I’m learning not to get P.O.’ed when people tell me how great I look and how lucky I am not to have brain cancer. I suppose they think they’re being positive, but, let’s face it, positivity is a way of blowing somebody off and shutting down any bad noise they might make. Some days I want to just stab positivity in the heart with a stake.
The hardest thing is that I don’t know how quick I’ll start to get sicker, with either my heart valve problem or the ET, and I’ve tried to interest my husband in not putting off some trips and visits, but he seems completely oblivious or in denial or something.
I’m not a whiner (except right here, right now, because, hey, nobody knows me, so I can let ‘er rip). I keep up my Little Mary Sunshne facade. I exercise more, I have lost weight, I eat better.
I don’t make long-term plans. I have given up my retirement dreams. I do my best to find reasons to keep on truckin’, but some days …
Jeremy: You have let us inside your head and many of us will see ourselves and how we look to our loved ones. It enables me to understand what Joe may be going through mentally especially since he can not express himself. Just look at the comments you generated. It means you have hit a nerve and you are getting depression out in the open. Sometimes we fell all alone and that no one understands. Thank God for technology today that we can connect with one another thus helping each other survive and thrive.
Thank you Bonnie. I try to share enough to help others open up. Or at they very least know to themselves they are not alone.
Thanks, Jeremy, for shining some light on our dirty little secret: depression. Also, Helen’s
comments echoed many of my feelings. I’m mourning the loss of some friends, one that
I thought was a “forever friend”, but am learning to just say very little to anyone. One of my favorite authors, Louise Penney, has a character in several of her books that says she’s “FINE”, which means F-d up, Insecure, Neurotic and Egotistical. Now, I say I’m FINE
when someone asks about my health and have a private laugh instead of wishing I could talk to someone about what’s really going on. Humor gets me through my darkest times…
Thank you for your comments. Its always a challenge on whether or not to let people in to our “World” of thoughts? Yes humor is an important source for relief.
Thank you so much for speaking on this subject! I was clinically depressed before dignoses and have gotten worse since! The thing that gives me the hardest time is everyone saying ” you look great”, I might look great but I don’t feel great! This past month I was hospitalized for a cardiac effusion had had heart surgery to drain all the fluid! I had a window put in! I was in the hospital for 8 days and my children still didn’t see even my heart surgery as that important! I have a 6 in scar and had a drain for 7 days! I just think as the strong on in the family they cannot come to terms with mom might not be around for as long as they expect! I think with all chronic illnesses it is easy to ignore the disease and not see the pain! This makes me so sad. I try to forget I have PV but I am constantly worried about its transition to something worse! It’s hard to know that while all the people around you just see the outside! I will pray that they never have to walk in my shoes, but I’m tired of walking in them myself!
Thank you so much for sharing. So many people have shared similar stories to you and I think sometimes we are actors. We have our life and then our MPN Life and we float back and forth between them. No one in my family thinks I am going to do from my MPN even though I transitioned from PV to MF. I wish I started INFN earlier but such is life you just never know. I think its hard for people when we explore the unknown. We are all aware that at some point, healthy or not we will pass on. However with a MPN most people look and act normally so they think we are. I think that is a good thing in many ways but outs also challenging as you and others have pointed out.
I hope you find a place like I did for myself that allows me to deal with all of this. If I or anyone can be of help please reach out as we are all going through so many similarly feelings.
Thank you. I am glad that the article helped you to feel better. If there is anything I can do please feel to reach out to myself or anyone in our group. We are all on this together even if we do go it alone much of the time.
I appreciate this article. I have felt a bit depressed lately. I was diagnosed with PV 2 years ago now, and my emotions can go up and down a lot with the kinds of thoughts you describe. The phlebotomies, and the routine blood work, and the periods of fatigue, all serve to remind me of this condition that I have that may shorten my life considerably. And yet I am aware that what I have is so much less terrible than other things others have been diagnosed with that sometimes I feel guilty to have these feelings about my own situation. I was able to feel a bit more for myself from reading this.
Thank you for sharing this part of your life, Jeremy. I can be found hiding out in my room every once in a while, too. My biggest fear is that my family and friends will see me as weak or letting them down. I am the “leader of the band” and everyone looks to me for reassurance. Not so much reassurance about my health, but life in general. I look the same, (a little older, maybe), I act the same but I am not the same. Every so often I am able to just let go and share the changes that have happened within me, but doing so makes me feel very vulnerable. Peace……….
Thank you for sharing Kathy Van Meter. Being vulnerable can be good its not damaging but we are often taught as leaders not to be this way and I disagree. I am a leader at home and at work. There are times I want to share with everyone how I feel and what’s going on but I cannot and I save how I feel up for my therapist appointments. Over the years I have learned our family and friends cannot handle us leaving the planet and the more you share with them the more depressed they become so I share with my therapist on the darker deeper matters more than with my family and they are happier and so am I.
Great article, Jeremy. I have talked and thought a great deal about this topic… many people around me see me as strong, but the bare truth is that helping others is really my coping mechanism. It makes me feel useful when in life, especially on bad days, sometimes I don’t feel very useful! Thank you for such a thoughtful article.
You are welcome Kathy. I have learned from this article and Zhen’s post on Facebook we all need to talk about this subject more often. People see me as strong as well and yet there are time I am not but I hide it because I cannot let anyone down. Yet I cannot share how I feel either. My mental therapy is really helped me find a place I can unload and share how I feel.
I find myself depressed by much of the fund raising rhetoric of the various cancer groups. Although they use terms like working for a “cure” less than they used to, they still always frame their mission in terms of “fighting” metaphors, which promotes the general belief that if you get cancer you either fight hard and win over it or you are defeated by it and die (preferable fast if people are to remember you with kindness). My experience is that there is a gradual moving away from the known cancer patient by certain kinds of people, some even thinking they can catch it. Again, the rhetoric of the fund raisers promotes this belief that cancer is an invasion of the body like the flu, or typhoid. Those who do stay on as friends or intimates do not always understand what “chronic” means in terms of cancer and are offended, of at least disturbed, at the idea that cancer is an action of our own bodies which can sometimes be controlled for long periods of time by treatment, but is nevertheless still inside one’s body. It is as if you should be able to cleanse the body and if not the body is dirty. Most people would have no trouble keeping a friendship with someone with diabetes or heart disease, both “chronic” conditions that may lead to an earlier death, without feeling the person should get the chronic condition our of their body, but there seems to be a sense that if you have cancer and you go on having it year after year, that you are not really “fighting” it. As well, one must live with the fact that it would be the rare person who would really want to talk to you about the subject that is most important to you, your cancer. They might be comfortable talking to you if you about your treatments and challenges if you had anything else chronic, but not cancer. After a while you learn to live more inside yourself and seek less intimate relationships, sometimes regretting that you ever told your intimates the truth of your condition, wishing you had just said it was a “blood condition” that is “under control”. End of story. You miss those who have gone from your life, but now it is just easier to make a social life of book clubs, exercise buddies, or talking to the dog while taking a pleasant walk.
Each morning I wake up I have about 90 seconds of terrible depression which I think will last forever and during which I grieve deeply for all I have lost, and I think of all the people who I love and cannot talk to about my “real” life. Then I get up, make my coffee, watch the recording of my favourite late night comic, or I read the news on line, find an excuse to walk to the grocery store or the vegetable market where I have mini-conversations with other customers and clerks, just enough exchange to feel like one is a social being.They talk to me like I am a normal person and it lifts the day up. Then I can go on to all the activities that are available to all “normal” people and to me too. Depression requires many strategies but most of all, to lift that depression daily, it requires a full acceptance of the loneliness at the centre of the chronic cancer experience, a loneliness that can be turned into a productive aloneness.
First Helen thank you for sharing so much of yourself in your post. You said so many thing I wish I had said in my article and yes the loneliness that accompanies this disease is tough to deal with. “I think of all the people who I love and cannot talk to about my “real” life.” I really feel your quote. If you can’t stay out late for a dinner with friends, as people would like you to because you are exhausted you feel like you let others down. The burden of being the leader of your family with an MPN is tough. For me seeing a mental health therapist has brought so much light to my life. I hope you continue sharing your thoughts because its helpful for others to share with you. I also agree with you about the fundraising issues its tough.
First Helen thank you for sharing so much of yourself in your post. You said so many things I wish I had said in my article and yes the loneliness that accompanies this disease is tough to deal with and living in your head is quite common. “I think of all the people who I love and cannot talk to about my “real” life.” I really feel your quote. If you can’t stay out late for a dinner with friends, as people would like you to because you are exhausted you feel like you let others down. The burden of being the leader of your family with an MPN is tough. For me seeing a mental health therapist has brought so much light to my life. I hope you continue sharing your thoughts because its helpful for others to share with you. I also agree with you about the fundraising issues its tough.
Thank you for the comments I hope everyone reads your response.
Excellent article which I feel was much needed. We try to put on a happy face and help others but in reality we really need help to keep from drowning (rather from an MPN or the life around us).